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In this episode, guest host, Dr. Christopher Cross, Director of Global Health Equity Strategies at ASCO moderates a discussion with the Dr. Ophira Ginsburg Co-Author of the Lancet Commission on women, power, and cancer and Dr. Julie Gralow, an advisor to the Commission. Dr. Ginsburg and Dr. Gralow share their insight into social determinants of health in cancer and prevention among women and global efforts underway to advance health equity.
TRANSCRIPT
The guest on this podcast episode has no disclosures to declare.Dr. Christopher Cross: Welcome to ASCO's Social Determinants of Health in Cancer Care Podcast. I'm Dr. Christopher Cross, Director of Global Health Equity Strategies at ASCO.
I'm joined by Dr. Ophira Ginsburg, Senior Advisor for Clinical Research Center for Global Health at the National Cancer Institute, and Dr. Julie Gralow, Chief Medical Officer, and Executive Vice President of ASCO.
In this episode, we will discuss social determinants of health, focusing on women, cancer, and prevention. Thank you both for being a part of our podcast, we're excited to have you on.
Dr. Ophira Ginsburg: Thanks so much. My pleasure.
Dr. Julie Gralow: Thanks, Chris.
Dr. Christopher Cross: So, we'd like to start the conversation with asking our guests, how do you define social determinants of health and cancer care?
Dr. Ophira Ginsburg: Well, social determinants of health, according to the World Health Organization, I'm sure as you know, is really looking at a person's background that leads them to health inequities or health inequality. So, it has to do with the conditions under which people are born, how they develop, grow, live, work, age, and all the sort of forces and systems that shape their daily living conditions.
With respect to the interaction of women and cancer with respect to the social determinants of health, as we put forward in our commission report, really, gender has an influence on all of these factors. And not just gender, but the other intersectional aspects of a person's identity that can serve to compound and influence in a negative way their opportunities to understand what their risks of cancer are, to avoid those risks, to seek and obtain respectful, prompt, timely quality cancer health services.
And this also influences the way in which women interact with the health systems for cancer as care providers, whether it's clinicians, et cetera, or also, is the unpaid caregivers, as we sometimes call them, informal workforce. There's nothing informal about it.
Dr. Julie Gralow: And I would agree with the Ophira's definition. I think of it as the environment in which people are born, live, learn, and work, and how it impacts health.
And so, that can include economic stability, education access and quality, healthcare access and quality, the neighborhood and the environment in which the person lives. And then the social community context, the family, the relationships, all of those can combine to impact health.
Dr. Christopher Cross: Thank you for those responses. What does social determinants of health for women mean at a global level, Dr. Ginsburg?
Dr. Ophira Ginsburg: Global is local. So, we see social determinants of health, and by the way, also commercial determinants of health, which would be wrong not to include in this discussion as greatly impacting the aspects of opportunities to seek and prevent cancer, et cetera, everything we just discussed; this happens also on a global level.
So, as we show in our commission report where a woman lives does greatly influence cancer incidents, mortality, survival, and also, very importantly, who that woman is in her community. Whether she's living in a circumstance situation or there are identity factors that render her structurally marginalized will impact also on her lived experience of cancer.
And we have nine stories that highlight and offer some human aspect to what people are going through, whether they're care providers or women living with the experience of cancer on a personal level, the different countries and context in our report.
Dr. Julie Gralow: With respect to social determinants of health and women, particularly at a global level, I think women interact with cancer in so many ways. I mean, the easy way to think about it is women with a diagnosis of cancer, but we've also got women working to reduce their risk of cancer and detecting it early.
We've also got women in the workforce, health professionals, researchers, we've got women as policymakers, and in the home environment, we have women as caregivers. And they are much more frequently the decision makers for everybody in the family with respect to healthcare related issues.
So, women interact with cancer in so many different ways, and those social determinants of health mean that women are more commonly subject to discrimination. It can be discrimination due to their gender, but also, their age, their race, their ethnicity, their socioeconomic status. And as Dr. Ginsburg has pointed out that this can marginalize them.
And these factors can restrict a woman's rights and her opportunities to reduce her risk of getting cancer. And it can be a barrier to early diagnosis to achieving quality cancer care. And we've got this whole (which is really predominantly portrayed in there) unpaid caregiver workforce that is almost all female around the world. And this can hinder a woman's professional development as well.
Dr. Christopher Cross: When you were talking, Dr. Gralow, it made me think of hearing about the story of the former First Lady Rosalynn Carter. Her father passed away when she was around 13 or 14 from cancer, and she said she had to become the caregiver as like the oldest sibling.
And talking about that in wake of her passing, in her advocacy for mental health and caregiving, I think is right along this conversation that people may not be experts as you two are, but they have lived experiences where they've had to step into these roles. And so, thank you for bringing to light the global context.
Like you were saying, Dr. Ginsburg, local is global, and I think this is something that everybody can relate to.
Now, let's get into the work that you both are doing. Can you tell our audience about Women, power, and cancer: A Lancet Commission and your role and any of the key findings you may want to highlight?
Dr. Ophira Ginsburg: Yeah, I'm happy to take that one on. To start with, I was very fortunate to have a conversation with the editor-in-chief of the Lancet, Dr. Richard Horton, several years ago now, three years ago actually.
And we at that time, were making kind of note of where we were at some three years after the publication of a three-part series called Health, Equity, and Women's Cancer that was published in the Lancet that was specifically oriented around breast and cervical cancer, and the difficulties and challenges women have in obtaining equitable access to care.
And to some extent, we commented on what we don't know about, for example, the children that are left behind when a woman dies of one of these cancers. And we emphasized the importance of more research in that area.
This led to my pitching proposal for a commission, and this was approved, and we published an initial commentary (Richard and myself) in July of 2020 that led to the commission that we now have as a major report in the Lancet that was published on September 27th, and excited to speak about that.
I might just emphasize a couple of key data points in the report that I think the listeners would be interested to know. Well, for the first time, we were able to show the number of women's lives that could be saved if just four risk factors were addressed.
So, we found that 1.3 million women's lives would be saved if tobacco, alcohol, obesity, and infections could be controlled. Now, why is this important for women? Well, it's important for men as well, and I know people often ask, “Why did you focus on women?” We can get to that if people are interested.
But to emphasize the importance of the preventability and lack thereof, we know what is contributing to a large proportion of cancer in women, but what many people don't know is what the numbers actually show with respect to premature mortality and how that relates to maternal orphans, that I just mentioned that hadn't been really addressed before.
So, when you look at the number of men and women with cancer, it's roughly equal. It's almost 50/50. Now, men are more likely to die of cancer than women. About 44% of all cancer deaths occur in women, so it's not that much less.
But when you look at the number of women experiencing cancer under the age of 50, in 2020 alone, of the 3 million adults diagnosed with cancer, two in three were women. That was a data point hiding in plain sight, we produced that. That was published in advance of this report in the Lancet Oncology with a few of us on the commission.
And then in the commission report, we really dug into the preventability of premature deaths, and we found that 1.5 million women could be spared, a death under the age of 70 due to cancer if everyone had access to primary prevention and early detection strategies that we know work and we know exist. And another 800,000 women's lives could be saved premature deaths below the age of 70 if every woman everywhere diagnosed with cancer had access to optimal care.
In 2020 alone, 1 million children lost their mothers due to cancer, just that year. And when we looked at the prevalence, so the number of kids who were without their mothers who were still children in 2020, it's seven and a half million.
This was work done by our colleagues at IARC, Dr. Valerie McCormack group, and many of us were on that report as well. So, these are big numbers and I think that's what's gotten people talking about this.
Dr. Julie Gralow: I was fortunate to be invited by Dr. Ginsburg early in the formation of this commission to serve as an advisor on the commission. I did not serve as a commissioner itself, but at a high level, tried to see what I could do to support the gathering of information and the discussions that led to the recommendations that came out of it.
And in my advisor role, I am working hard to promote this commission, to get the word out. It's really been interesting to see the engagement across the board with media, with policymakers, cancer center directors, the NCI director who now, is our NIH director, actually wrote an editorial as part of this Monica Bertagnolli.
I have been thrilled to see the uptake of it. And part of my job as an advisor is to continue to get that message out and frankly to help us respond to the recommendations that came out of this report.
Dr. Ophira Ginsburg: Absolutely. I'm just going to add to that by saying thank you, Dr. Gralow, for being such a key advisor on this work. Really, this kind of work takes a village.
We have 21 commissioners, 10 mentees from across the world. More than half of our commissioners are living in a lower middle-income country. Most of those in high-income countries actually were raised and trained in a low and middle-income country.
We have four men among us, but we have our advisory board, and also, a seven-person patient advocacy committee that I don't want to forget to mention, who really held our feet to the fire and ensured that their voices were not just heard, but they helped to co-create the content, as did very much our advisors like Dr. Gralow.
Dr. Christopher Cross: I also want to add my thanks to your thanks Dr. Ginsburg, for all the work that both you and Dr. Gralow are doing at the commission.
So, I want to set the stage here for the audience. In the first half, I think we talked about really laying the landscape globally around social determinants of health broadly. Then it sounds like we really focused on the disproportionate burden of caregiving across globally.
Now, Dr. Ginsburg, you've mentioned these four key areas around if we address them, it would have a marketed effect of impact. I just wanted to reiterate those. You've mentioned tobacco, alcohol, obesity, and infection.
You talk about sort of a mindset or an approach that I think underscores these things that we've already mentioned. Could you talk a little bit more about how important is feminism in addressing and achieving equity at a global scale for women affected by cancer?
Dr. Ophira Ginsburg: Oh, I'm so glad you asked that. It was something that, to be honest, very early on as we came together as a commission on Zoom, because it was mostly during the worst part of the pandemic, we questioned amongst ourselves whether we should use the word feminism. And it was actually to his credit that Dr. Richard Horton, the editor-in-chief said, “Absolutely, you should.”
And we thought about it from our various countries where we were all living. Some felt a little nervous about it, said, “Well, maybe we won't be taken seriously, maybe we'll get backlash. It'll take away from the key messages, et cetera.”
And then we decided as we decided everything by consensus, which by the way is a feminist approach — that the fact that we were debating it meant we had to say it. That's exactly it. And so, sure enough, every time we're asked this, it's actually easier each time to reflect on what do we actually mean by feminism here?
Well, one way they define it, and I think it's Mary Wollstonecraft who said, “Feminism is not about women having power over men, it's about women having power over ourselves. This is where power comes in, the asymmetries of power that prevail.”
In the report as people will read, we looked at three domains of this: knowledge, understanding what our risks are, understanding our role in society, and understanding anything about cancer, our decision-making as we show in the very elaborate section on health systems where women in many situations, in many countries, not just in the global south, don't really have decision-making power over their own health. And then the third being asymmetries of power with respect to economics.
And in fact, it was an intersectional feminist approach that we ultimately decided was most useful here. And we have a conceptual framework, sort of one of those diagrams people can look at and think about, “How does that impact on my own interaction with the cancer health system, whether I'm living with cancer, looking after somebody with cancer, I'm a cancer health provider, a researcher, policymaker, or a combination of these in fact.”
Dr. Julie Gralow: Dr. Ginsburg, I have a question for you related to some of what you've just said. For the first couple of years of the commission's workings, it was called the Commission on Women & Cancer. And as you were getting to the finish line and ready to launch it, you added that word “power.” So, it's the Lancet Commission on Women, Power, and Cancer.
How did that come about and what's been the reaction to adding that word power in?
Dr. Ophira Ginsburg: In fact, there was a commentary written in response to the three-part series I mentioned earlier: Health, Equity and Women's Cancer by then President of Chile, Dr. Michelle Bachelet, who went on to become the UN Human Rights Commissioner.
And she wrote a commentary in response to our three-part series called Women, Power, and the Cancer Divide. And it really spoke to me. I remember keeping that in my head all this time, it's several years, that was 2017, actually.
And we ultimately realized that power was really at the center of this important aspect of inequality and inequity. And if we could recognize where the power differentials are, it would help inform the solutions that we bring forward in our 10 recommendations.
So, at the end of the day, we had that placeholder, women and cancer report, and our editor, our handling editor, Dr. Vania Wisdom said, “Why don't we just call it Women, Power, and Cancer?” And we all laughed. Of course, it was fighting in plain sight.
Dr. Christopher Cross: This is all just fantastic. And to me as a researcher myself, I see the benefit of this approach you've articulated in a way of, it's led to the disaggregation of subtypes of cancer that affect women and even other groups.
So, you've mentioned disaggregating deaths of women and looking at age as a spectrum, and then underscoring that less than 50 at that age, there's so many other disparities that are dominantly affecting that age group. To me, that underscores the ROI, if you will, the value, the power in using a feminist approach to address cancer research for women.
And now, I got a question for you, Dr. Gralow; you humbly mentioned your role as an advisor on this commission, but I want you to speak to the roles that women are taking, especially physician researchers in these organizations that are pivotal in addressing and achieving global health equity.
Dr. Julie Gralow: Thanks for bringing that up. We haven't really delved into the role of women in the workforce, and there have clearly been inequities there across the world and in the United States.
But I think it's a very exciting time in the United States as we now have a female head of our National Institutes of Health, and we have a female nominee to replace her as the Head of the National Cancer Institute. The CEO of both the American Cancer Society and the National Comprehensive Cancer Network are now women.
We have female presidents of both ACR and ASCO right now. I'm in my role at ASCO as the Chief Medical Officer. I mean, just look at what has happened recently. Now, that doesn't mean that we've solved the problem of equity in the workforce in the United States, much less the rest of the world, but we do have female leaders and we are all committed to hold the door open to those who follow behind us.
And we've actually had some joking about, “Just blow up the door entirely. Why do we have a door that's blocking the women who we're helping promote?” So, I think it's a very exciting time in our workforce in the U.S., and I see it in many other countries too.
I mean, look at some of the commissioners on this Lancet Commission, Dr. Ginsburg, the current president of AORTIC, the African Organization for Research and Training in Cancer, for example, and many others.
Dr. Ophira Ginsburg: Absolutely. I love the way you put that. Yeah, leave the door wide open. We do have tremendous leadership amongst our commissioners. And in fact, the fact that we have all these mentees coming up ranks, it's just great.
AORTIC, the African Organization for Research and Training in Cancer is particularly notable, representing the continent of Africa for having a lot of strong women leaders, including as Dr. Gralow just said, Dr. Miriam Mutebi. She's a breast surgeon based in Nairobi, Kenya, who just came on as the new president of AORTIC.
And we actually held a launch event there. We had the global launch of this commission report September 27th in Geneva, Switzerland at the Graduate Institute. And we had a lot of activity around that launch and media activity.
And just a week and a half or so ago, we had our African regional launch held at the biannual meeting of AORTIC, and that was just phenomenal. I mean, Dr. Gralow was there, I don’t know if you want to say anything, but the panelists were just — I was so pulled over by the depth and the breadths and the scope of the conversation, and the way it was so personal for so many of our commissioners who are from the region.
Dr. Julie Gralow: Yeah, I was at the African launch sitting next to our ASCO president, Dr. Lynn Schuchter, it was her first AORTIC meeting. And she was so impressed with the launch and the talks that went along with it, and the content of this commission that she immediately said, “Okay, we need to feature this prominently at our ASCO annual meeting next June in Chicago.”
So, we are working with Dr. Ginsburg and the commission on what we can do to bring this to North America now in a prominent way.
Dr. Ophira Ginsburg: Yeah, we're very excited about this prospect. I just want to add, we do intend to have regional launches elsewhere and we're working with our colleagues in SLACOM, another one of our valued partners — Society of Medical Oncology from Latin America & the Caribbean led by Dr. Eduardo Cazap was also an advisor to see how best to put together a launch event in that region as well, sometime in the spring.
I might just add, it's not just meant to have another dissemination event and we can have a webinar and have a discussion, which is important, but we can also tailor the data to reflect the unique epidemiology and health systems issues and other aspects that are relevant to achieving the outcomes we want to see in a given region.
So, for example, in Senegal, Dr. Isabelle Soerjomataram, one of the co-chairs, the other being Dr. Verna Vanderpuye, also one of the leaders of AORTIC. Dr. Soerjomataram is at IARC, WHO's cancer agency, and she put together specific data points breaking down what was relevant for the African continent and presented that alongside this panel discussion we were just talking about.
Dr. Christopher Cross: For me, a natural question just follows up … listening to you both talk about all of these advancements and these powerhouses that are moving the needle. What is the hope for in the next maybe 5 to 10 years that we will hope to see, given this change in leadership and this new direction we're going in?
Dr. Ophira Ginsburg: I'll say that with what we just heard from Dr. Gralow regarding the leadership currently between the NIH, I mean we're just thrilled that Dr. Monica Bertagnolli wrote a commentary for our commission report and then becomes the NIH director and the incoming NCI director also being female, et cetera.
But in fact, when we looked at other aspects of research outputs, this is one thing I'd like to bring up because I mean the people listening would be ASCO members primarily, people who are scientists and working in the research ecosystem in cancer epidemiology care control.
We found that of the top 100 ranked journals in cancer research, that's by impact factor. I will ask you, Chris, what percent do you think had an editor-in-chief that was female? Putting you on the spot, any guesses?
Dr. Christopher Cross: I would say less than 20%.Dr. Ophira Ginsburg: Ooh, you're good. I thought it would be probably 30%. 16 — 16%, that's it. And another piece of research we did for the report was looking at the membership of UICC, the Union for International Cancer Control, also valued partner.
UICC membership organizations that were listed as research institutes, cancer centers, et cetera, had also that same number. Only 16% were led by women. So, we do really have a long way to go, but there have been a lot of improvements over time.
But if we maintain the status quo, it's going to be like a hundred years to get to parity. So, I encourage people to look at the report. We have specific recommendations, and we also invite people interested in collaborating with us to action those recommendations.
Looking into emerging cancer risks, we need scientists who are interested in that area. We only understand about a third of the risk of breast cancer right now, and that third includes mostly factors that are not really amenable to primary prevention. So, what's up with that?
Dr. Christopher Cross: Absolutely. Dr. Gralow, I'm curious, what do you think the hope is given our new leadership landscape to address health equity and cancer care for women?
Dr. Julie Gralow: In the next five years, as you started the question, I would hope to see that we've now created awareness, and so we begin dismantling some of the structural things that have been put in place, that have created the barriers.
Hearing the numbers of all cancer deaths globally, only 44% are women. You would really potentially come at this, thinking, “Oh, it's not such a problem.” But then diving into the data and the report of cancer deaths under the age of 50, a significant proportion of them are women, many leaving behind children.
A lot of that is cervical cancer, which with the HPV vaccine, we could prevent, or with early detection of pre-cancer, we can eliminate cervical cancer, that's our goal. We're working with WHO and breast cancer, early detection. So, those are the two main cancers that are impacting women in this young age group.
So, I think recognition of that, acknowledgement of that, looking at the prevention piece, those four main risk factors: tobacco, alcohol, obesity, and infection — working on breast and cervical cancer in partnership with the WHO's initiatives there, I think we can make a dent.
With respect to the workforce, we're paying a lot of attention to this, and I do think we've seen strides in our ASCO committees, our ASCO board, our ASCO presidents. We work very hard to achieve balance across gender and race and ethnicity, et cetera.
So, those are some of the things I hope we can make a dent in, in the next five years. We have a long way to go, but we can't wait a hundred years as Ophira says, to make these strides.
Dr. Ophira Ginsburg: If you think about what are the so-called lower hanging fruit in this that could be really actioned within the immediate and medium term. So, five years, absolutely. By five years, we should have — for example, we have a specific recommendation on a gender competency framework for the education and training of the cancer healthcare workforce.
One of our key findings was that sexual harassment, bullying, et cetera, is a huge problem, just like it is in every other domain, unfortunately. And it's long overdue that the oncology community has its MeToo moment and recognition of this that impedes women's progress as healthcare workers, as researchers, as leaders, in as much as it also hinders a woman's opportunity to seek respectful care and feel that they will be dealt with in a respectful manner.
I didn't mention this until now, but when we say women in this report, we're talking about women in all their diversities in terms of race, age, ethnicity, et cetera. And also, women who would identify as belonging to a diverse sexual orientation, gender identity, and expression.
And we do have quite a bit of content in the report on the work of the Cancer and LGBTQ Network, for example, and some of their recommendations. They were one of our partners. We have a story featured on that topic more broadly.
But this gender competency framework is something we can all start looking to now, that was led by one of our commissioners, Dr. Nazik Hammad, who's a medical oncologist from Sudan living in Canada, who has a whole world of experience as an educator as well.
Dr. Christopher Cross: Thank you for sharing that. As you know, ASCO has been doing a number of work with this. We've had our own Sexual Gender Minorities Task Force, which has now gone on to be the Sexual Gender Minority Advisory Group, which will report under our new Equity Diversity Inclusion Committee. So, we're also very excited to make sure we continue to be partners with you and the work you're doing.
So, we're kind of wrapping up, but I wanted to make sure I left time for any final thoughts you would like to share to the listeners.
Dr. Julie Gralow: Well, I'd like to actually thank our listeners because that means you are at least trying to learn. I'd encourage anyone who's made it through this podcast, and this resonates with them, and they want to learn more to look at the report. There are multiple pieces to it, multiple sub articles. You can just read the summary if that's all you have time for, but read it, mull it over. I think we'd all like feedback on it.
And then let's partner together to try to meet some of the goals and the recommendations in the short-term. And then build a strong community where we don't have to be writing commissions related to women in cancer any longer in the coming years.
That's what I would like to share with our listeners. It's a great report. It's packed, full of information. I learned a lot from reading the report, even though I was part of many of the meetings. So, every time I take a look at it, I find another pearl or something else that I can put into a talk.
So, congratulations, Dr. Ginsburg, on leading this really important piece of work, and let's work together to try to overcome some of these really crucial inequities that we've found and make cancer better for everyone.
Dr. Christopher Cross: Thank you, Dr. Gralow. Do you have any final thoughts, Dr. Ginsburg?Dr. Ophira Ginsburg: Well, thanks so much for the opportunity and also to the listeners, I greatly appreciate the way you put that, Dr. Gralow.
And I would say that please don't be daunted. We present a lot of new findings that can be a bit depressing quite honestly, but that's not our aim.
We have a lot of the content oriented around resilience and what's working. For example, two country examples where they actually are paying people looking after their loved ones with cancer at home. The unpaid caregivers are actually paid or covered in some way in some countries. So, there's a lot of good stuff in there as well.
The bottom line is, it really will take all of us to make an impact. And this is not just about making things better for women at risk of or living with cancer or working with cancer patients. If we take these recommendations forward, it will benefit people of all genders.
So, I would suggest, take a look within yourself, think about how you might be part of the problem, you might be part of the solution, and you might work within your organization or even wherever you might volunteer or serve some other aspect of the cancer ecosystem to take these actions forward and look carefully at the recommendations and join us.
This is just the beginning; I'll end with that. We are just at the beginning of this program of work on women, power, and chancellor, and we welcome all input. Thanks so much for the opportunity to speak with you today.
Dr. Christopher Cross: Well, I just have to thank you both. This has been a fantastic discussion, and just thank you again, Dr. Gralow and Dr. Ginsburg for joining us on this episode of the ASCO’s Social Determinants of Health in Cancer Care Podcast. And thank you to our listeners for being a part of the conversation.
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In this episode, guest host, Dr. Surendra Shastri is joined by Dr. Timothy Rebbeck to discuss social determinants of health at the global level and the impact on cancer care, prevention, and control.
Dr. Surendra Shastri is a Professor, Department of Health Disparities Research at MD Anderson Cancer Center. Dr. Timothy Rebbeck is the Vincent L. Gregory Professor of Cancer Prevention at the Harvard T.H. Chan School of Public Health and Professor of Medical Oncology at Dana-Farber Cancer Institute. Professor Rebbeck also serves as the director for the Zhu Family Center for Global Cancer Prevention Harvard TH Chan School of Public Health and the Center for Cancer Equity and Engagement at Dana Farber Harvard Cancer Center.TRANSCRIPT
The guest on this podcast episode has no disclosures to declare.
Dr. Surendranath Shastri: Hello everyone. Welcome to ASCO's Social Determinants of Health in Cancer Care podcast. My name is Surendranath Shastri and I serve as Professor in the Department of Health Disparities Research, the Division of Cancer Prevention and Population Sciences at the MD Anderson Cancer Center. Joining us today is the very renowned Dr. Timothy Rebbeck, who serves as a Professor at the Dana-Farber Cancer Institute and Harvard T.H. Chan School of Public Health. In this episode, we will discuss social determinants of health with a global perspective and what impact those have on cancer care in general with a little specific attention to cancer prevention and control.
Thank you, Professor Rebbeck, for agreeing to be a part of our podcast.
Dr. Timothy Rebbeck: Happy to join you today.
Dr. Surendranath Shastri: Thank you very much. We are really blessed to have you on this podcast. So let's get the podcast rolling. We would like to begin the conversation with a simple question: How do you define social determinants of health in cancer care, particularly those in prevention?
Dr. Timothy Rebbeck: So I think the definitions that we need to be thinking about are really very specific to the questions we're trying to address. So there are many ways one could define social determinants. They are generally, in the United States at least, consequences of the legacy of historical, political, economic, and social influences, particularly for minority populations; those of the legacy of slavery and other related discrimination and segregation activities that have happened over many, many years and centuries, really. So that's not really an answer to how we define it, but I think that way we define it in terms of the research question or the clinical or public health question, and that using those variables that we define, we should be able to identify different groups who have specific needs or for whom we need to create interventions or prioritize activities to eliminate disparities.
Dr. Surendranath Shastri: So speaking about social determinants of health in cancer care, particularly in the US, looking at the global perspective, I'm sure you'll agree that the social determinants might not be the same for people living in the US as compared to, say, people living in countries in South America or people living in Asia. So let me ask you a direct question pertaining to your work because you have been working globally and you have a lot of multicentric studies: Have you seen real life differences in social determinants of health based on geography and country in some of your multicentric studies? For example, you have this very large score study where you're looking at population groups of different backgrounds. So something like that?
Dr. Timothy Rebbeck: Yes, absolutely. I would say that the categories or domains of social determinants are not fundamentally different in different parts of the world. They all involve things like access to care, insurance and payment, education and knowledge, things like that. Those are common to anywhere in the world. But the manifestation of those social determinants is really quite different in different parts of the world. So we can assume that a lot of the same factors are acting, but they are magnified in places that are low resource because the health systems and the governmental payer and care systems are quite different. The specific activities or limitations, barriers, vary by country or system. And so I think that we can think about the same problems as being universal worldwide, but the manifestation and specific things that we need to address in a particular region or country will vary quite a bit.
Dr. Surendranath Shastri: Understood. So you would also agree that even within the same country, you will find huge disparities between populations and between people of different social classes if I'm permitted to say that?
Dr. Timothy Rebbeck: Yeah, absolutely. And so, not unlike what we see in the United States, there are people that can afford access to the very best health care in the entire world. In Africa, for example, where I do a lot of my work, the very wealthiest people can get on an airplane and fly to France or England and get their care there. And the poorest in the United States or in Africa or South America have significant barriers to obtaining the best care. And in fact, in places like Africa low resource countries, the care is, maybe for the lowest socioeconomic groups, the lowest income groups in those countries, the barriers are really substantial and probably lead to the incredibly late diagnoses, high mortality rates that you see in a lot of low and middle income countries.
Dr. Surendranath Shastri: Absolutely. I completely agree with you because even in my personal experience, there are a couple of countries in sub-Saharan Africa which have maybe just one or two pathologists and just general pathologists - they're not even cancer pathologists. So, it's tough for them to access good quality health care.
So I have read some of your work, and you speak about neighborhood, social and natural environment. Could you explain that a little bit?
Dr. Timothy Rebbeck: Yeah, I think that when we think about environmental as an exposure, there are a lot of different classes of what environment could mean. And again, it depends a lot on the question, the goal that we have in defining these different characteristics and what we want to do to ameliorate disparities. So most environment that we tend to think about is individual level exposures. So radon exposures or cigarette smoking or sunlight, whatever those may be, we think about individual level exposures. And those are, of course, incredibly important.
But I think that there are other levels of exposure that we might want to explore. One of those is the neighborhood and contextual environments that are all around us. So where we live has an impact on our health, and particularly in the context of disparities, the neighborhood in which you live may determine your access to care. It may determine your access to healthy food. It may determine exposure to pollution, all kinds of levels that we may or may not be able to measure in a person, but we can measure in a neighborhood or an area context. Thinking about those gives us an additional layer of information about the kinds of risks people face as a group or as a neighborhood. And very importantly, they allow us to think about policy solutions. So if we can identify types of areas, say very polluted areas or areas that have very poor access to health care, those areas can be identified as having a particular need, and that need might be able to be addressed by policy or funding or things like that.
And again, I would say that's true in the United States, but it also is true in Africa or India or South America or any place where neighborhood exposures and neighborhood level factors vary, which they do everywhere. So we can learn from that, and particularly we can learn to make policy decisions.
Dr. Surendranath Shastri: Absolutely. We have large slums in many parts of Africa, as well as Asia. In India and South Asia particularly, you have large slums. You have large slums in Indonesia. So all those neighborhoods in the US—of course, you just mentioned, and the red line districts were historically denied all possible care and facilities - those districts also will be having all these problems. One example that immediately comes to my mind in the US is the smoking rates are very high among the African American Black people. Neighborhoods where you have a majority of African American Black people living, the second hand smoke exposure rates are going to be really very high. Is that what you meant by saying neighborhood social?
Dr. Timothy Rebbeck: Yes. So that's part of it. I mean, I think that individual level smoking exposures may affect the individual and may affect people in their household, but there are larger level factors that are acting. So, for example, tobacco companies target neighborhoods based on who lives there. It's not uncommon for a tobacco company to have offers for cigarettes, coupons, and vouchers that will be used in neighborhood stores in low resource neighborhoods. They will target their advertising.
For example, we know that African Americans tend to smoke menthol cigarettes more than other kinds of cigarettes, and that's really been a consequence of advertising and targeted marketing by tobacco companies to specific groups of people in specific neighborhoods. So there's all sorts of different levels at which neighborhoods are disadvantaged because of the socioeconomic position they're in, of historic segregation, redlinings, other social determinants, and also the targeting by companies or businesses around specific neighborhoods as well. So there's a lot of levels at which these impacts are occurring.
Dr. Surendranath Shastri: Excellent examples, and I've personally seen all of those, so I know exactly what you're talking about.
So another interesting area where you're working which could be a game changer, which may not be a game changer, we don't know really at this point of time—you might have guessed that I'm talking about MCED—the multi cancer early detection tests. So while they are being tested in countries that have the resources to do that and they will probably be rolled out in those countries, do you think, or do you perceive any challenges toward making MCED affordable, available, and accessible globally?
Dr. Timothy Rebbeck: Yeah, absolutely. So I think one of the key features of most screening tests, most early detection tests, and really clinical treatments as well, is that these new technologies usually are accompanied by subsequent disparities. So we know that any new technology is usually rolled out for the benefit of people that have access, that can afford it, that have insurance, whatever it may be. And that's true in the United States and it's also true globally. So that's an economic thing to some degree and it's a sociopolitical thing to some degree. We know this from mammography, we know this from low dose CT screening, we know it from colonoscopy that some groups benefit and others don't. And these disparities in the application of these screening tools lead to disparities in disease and outcome.
So there's no reason to think that that MCED tests are going to be any different because it's a new technology. What we hope is going to happen is that the MCED tests will be developed in a way using diverse data—developing tests so that they are applicable to a broad scope of the population, and then implemented in a way that everyone can benefit. We hope that that will be the case. And I think that people are much more aware now of the potential for disparities to exist or be created with the development of new technologies, so that people will be a little more aware than they may have been in the past about these issues. But it's still an economic issue. The current test that's available costs over $900 and it's not covered by insurance. The tests are still being developed and we hope that that will all change so that the tests can be used and benefit everyone in low resource settings as well as high resource settings in the United States. A lot of challenges in that implementation though.
Dr. Surendranath Shastri: I really hope that happens so that avenues can be opened up for people. A lot of people who come with advanced cancers just because simple, accessible, and affordable screening tests are not available in those places.
Dr. Timothy Rebbeck: The opportunity for low resource settings in global health for MCED tests is incredible. Because you can imagine it will always be difficult to have sufficient mammography, colonoscopy. But as an adjunct test or a low impact screening test, blood test, there's really a huge opportunity in the LMICs to create an opportunity for screening to be more widely accessible and available. But somebody's going to have to be thinking about that, valuing that, and making it economically feasible to do. And that's a big challenge. But it is also a huge opportunity.
Dr. Surendranath Shastri: Absolutely. And I'm sure a lot of your work is going to go into making those things possible.
So this is not a trick question really, but just to know your opinion on this - do you believe on a global scale or locally politics have an impact on health care?
Dr. Timothy Rebbeck: Politics do, but also policy does and the two go together, of course. But we know very well that if policymakers are informed by good data, informed by evidence that can guide their decisions, then they can make good decisions, they can allocate resources, they can do things that will improve health. So again, first of all, that requires evidence, it requires data. So research needs to be done that's relevant to these places.
So policymakers also need to be convinced of how to make these investments well. There's a lot of competing needs, particularly in low resource settings, middle income countries. The resource needs are substantial and they have a lot of different burdens. So we really need to make a clear argument about why things like MCED tests or screening for cancer or therapy for cancer are a good investment relative to all the other things. And so that's an evidence based problem. But it's something that policymakers can absolutely have an impact on.
When you talk about politics, of course, that's a little bit different because politics also go beyond evidence. They go into people's values, what they care about, what they don't care about. And all of those things absolutely do matter. And we know from very many historical examples in the United States and everywhere else that politics will affect people's health. I think that politics and policy are things that will have a huge impact on our ability to improve health, eliminate disparities, things like that.
Dr. Surendranath Shastri: Absolutely. These are things which will just go on and on. And I don't see any straightforward cure for politics affecting health care. Simple example would be we don't have Medicare expansion in all the states in the United States itself. So things like that happen all across the globe, so, you know, that's really a tough thing, but we have no solutions for that. We have to just keep working on policy.
Dr. Timothy Rebbeck: As investigators, researchers and academics, we actually can influence it by creating knowledge that people can use and then translating that into messaging and messages that politicians or policymakers or whatever can work with. So we do have a role we can play, maybe not as politicians, but we certainly have a role. And without the evidence, without the data, very few good decisions are made anyway.
Dr. Surendranath Shastri: Absolutely. I mean, healthcare advocacy is something which all healthcare professionals should get into because they're the people who really matter in terms of, of course, politics would come into play, but then policy is something which we need to guide and lead. Do you have any final thoughts you'd like to share with our listeners today?
Dr. Timothy Rebbeck: Well, I think that the problems that face us in terms of cancer, particularly in early detection, screening, therapy, monitoring, they're really substantial problems. They're big problems, they're not things that are easily solved. But I think that through research, through policy, through influencing those people who write checks for these things, both in the United States and elsewhere, we actually have a lot of promise to make something big happen. We have seen in the United States that cancer rates have dropped and that's because of research, because of policy, because of decisions and funding that people have come up with, the National Cancer Act, there are a lot of things that have led to where we are now. And so I think it's very promising that we can do more.
Not to say that we're anywhere close to where we want to be, but we also have opportunities in low and middle income countries to do the same. And in many places, the cancer rates are going to double or more. In Africa, we expect the cancer death rates to more than double in the coming 20 years. So now's the time we really need to be thinking about what we can do to head off that growing and predictable epidemic of cancer deaths. So we have evidence, we have people that will do it. We just need to come together and make it happen and build the evidence and convince people to invest. So I think there's a lot of promise in the future, but now's the time. We don't want to wait until cancer is the leading killer in Africa to start acting.
Dr. Surendranath Shastri: Very well said. Professor Rebbeck. Thank you again for joining us on this episode of ASCO's Social Determinants of Health in Cancer Care podcast.
Dr. Timothy Rebbeck: Thank you for having me.
Dr. Surendranath Shastri: And thanks to all our listeners for being a part of this very important conversation. To keep up with the latest from Social Determinants of Health and Cancer Care podcasts, please click subscribe so you never miss an episode and let us know what you think about the series by leaving a review. Visit asco.org/equity for the latest resources, research and more on equity, diversity and inclusion in oncology. Thank you very much.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.
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Пропущенные эпизоды?
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In this episode guest host, Dr. Reggie Tucker-Seeley, moderates a discussion with two leaders from two remarkable organizations with the mission to provide food to those that are facing long-term illnesses like cancer. In this episode, the importance of the community and organizations addressing food insecurity and providing needed interventions are highlighted by Alissa Wassung, Executive Director at Food is Medicine Coalition and Alyssa Baldino, Associate Director of Nutrition Services and Therapeutics at Project Angel Food.
TRANSCRIPT
The guest on this podcast episode has no disclosures to declare.
Dr. Reggie Tucker-Seeley: Welcome back to ASCO's Social Determinants of Health and Cancer Care podcast. I am Dr. Reggie Tucker-Seeley. We are continuing our conversation on “Community and Organizations Focused on organizations addressing Patient Needs in the Cancer Community.” I'm joined by Alissa Wassung, Executive Director of Food Is Medicine Coalition, and Alyssa Baldino, Associate Director of Nutrition Services and Therapeutics at Project Angel Food. In this episode, we will discuss a patient and household need that often gets overlooked following a cancer diagnosis, and that is food insecurity. We are fortunate to be joined by two people from amazing organizations with a mission to provide food to those that are facing long-term illnesses.
First, we have Food Is Medicine Coalition, which is a national organization that provides evidence-informed medical, food, and nutrition interventions to critically and chronically ill people while working to advance public policy surrounding food and nutrition. And second, we have Project Angel Food, located in Los Angeles, California, and is a part of the Food Is Medicine Coalition, which prepares and delivers healthy meals, comfort, and hope to people impacted by serious illness.
So, given that both of our guests today are named Alyssa, we're going to say Alyssa B and Alissa W to distinguish between our two guests. So, thank you both for being part of our Social Determinant of Health conversation focused on communities and organizations.
Alissa Wassung: Thank you so much for having us. We're so excited to be here.
Dr. Reggie Tucker-Seeley: Great. Let's dive right in. And this first question is one that we ask all of our guests, and that is: What does Social Determinants of Health in cancer care mean to you? We'll start with you, Alissa W.
Alissa Wassung: I would have to say that it means making sure that everyone who is coping with cancer has everything that they need to survive and thrive through the process. From our perspective as caregivers in the community for over 40 years, a lot of this knowledge and wisdom comes from our roots in the HIV epidemic and seeing how the toll of illness can take on a person and also their caregiving structure, that it affects the whole family. So really, having that holistic, person-centered view of what wellness and health means through a diagnosis like cancer, making sure that we are showing up for the food piece and paying attention to the rest of it as well. Alyssa B?
Alyssa Baldino: I've been a dietitian for nearly 15 years, and someone's ability to manage their chronic illness is so heavily influenced by their environment and the resources available. So, education is obviously a good building tool to help someone work within their resources, but it only goes so far. So, the more holistic you look at, especially cancer clients, the better you can help someone, the more you understand all the outside factors that affect their lives.
Dr. Reggie Tucker-Seeley: Thank you for providing those perspectives. Social Determinants of Health feels like such a broad term. It's often described as where we live, learn, work, and play, and that's everything. So, would you consider food insecurity as a social determinant of health?
Alissa Wassung: Absolutely. The ability to nourish oneself as you are supporting your own body through treatment and recovery is foundational to what we understand about health. I think what's different for our organizations is that food insecurity can be reduced to hunger. And certainly, our programs, medically tailored meal and medically tailored grocery programs that also provide the services of a registered dietitian that helps people with the education piece and some of the more clinical pieces like what's called medical nutrition therapy, are so much more than just addressing the hunger piece. So, food insecurity is absolutely a social determinant of health. So, in a spectrum, I would say food insecurity can be really addressed in the prevention phase and what we are doing is more on the treatment side of that food insecurity spectrum.
Alyssa Baldino: Education as registered dietitians is so powerful and can be a great tool for clients. But as a medically tailored meal provider, it's also empowering to be able to provide the food we are educating clients to nourish themselves with. So, in addition to the education piece through medical nutrition therapy, we're also able to provide the food as a resource to help address the treatment and the food insecurity.
Dr. Reggie Tucker-Seeley: So, it sounds like both of your organizations go well beyond just the notion of checking the box of "Are you hungry, are you food insecure, yes, or no?" I'd love to hear more about your organization. So, Alissa W, can you tell us a bit more about Food Is Medicine?
Alissa Wassung: The Food Is Medicine Coalition's history is really the history of our partner agencies, and so many of them got their start, as I briefly mentioned before, at the height of the AIDS pandemic back in the 1980s. And this was a time when HIV was not as understood as it is today. It was tremendously stigmatizing, and it was scary for some. Our communities across the country stepped into that space and brought hope and dignity to that situation in a time when there wasn't a lot of service available for folks. This was volunteers going into people's homes and bringing them food, as they recognized the effects of HIV, which included wasting, and tried to help people be as healthy as they could be when there was no treatment available.
The biggest realization during this time was that folks in this situation needed more than just access to food. They were too sick to shop or cook for themselves. And so, people were delivering groceries and they got left on the counter and just stayed there. And so, the recognition that people needed more than a meal, they needed meals tailored for their illness and delivered to their home so that they could live as long as they could with the illness that they had. Registered dietitians were actually foundational to this process because their services and understanding how to combat wasting or side effects of medication when it came on the scene was foundational to people actually eating. Appetite tends to be one of the first things to go when someone is sick, and that is certainly true in cancer care.
And so fast forward to a time when most of our agencies expanded their missions, now serving people living with multiple illnesses in communities across the country. What's very different about our clients is that they actually tend to be living with multiple illnesses at once. So, a client where I used to work at God's Love We Deliver, which is our non-sectarian, nonprofit peer agency in New York City, about 40% plus or so of folks were living with four or more illnesses at once. So very much trying to address the complexity of that situation with access to compassionate nutrition care.
We do all of this in the community with the help of thousands of volunteers a year and the support of our communities through philanthropy. Because despite the awesome intervention and its life-saving results, there still is no dedicated federal funding for what we do.
Dr. Reggie Tucker-Seeley: I'd love to hear from Alyssa B.
Alyssa Baldino: We were founded 35 years ago by Marianne Williamson. That name might sound familiar. As Alissa W. was saying, we started out of the HIV/AIDS epidemic. We started out to provide food for people who didn't have food. They needed a lot of calories, and as medications got better for HIV/AIDS, about 20 years ago, we shifted to medically tailored meals and started providing meals to, actually cancer patients was one of our first groups that we started providing medically tailored meals to. And then kidney disease is something we address, diabetes, heart disease. And usually how patients find us is through their doctor and also, I like to think we're pretty well known in Los Angeles. We have a lot of celebrity support that gets our name out there. Harry and Meghan made deliveries for us. Like Alissa was saying, volunteers, so we have the spectrum of volunteers. Patients are generally referred to us from medical providers and a lot of the cancer centers.
Dr. Reggie Tucker-Seeley: Well, in two words, you mentioned Harry and Meghan. If you just have to say their first names, then you know that they're famous. So that's amazing.
I'd like to talk about how both of your organizations partner with healthcare delivery systems and healthcare organizations. Can you talk a little bit about how you partner and whether or not you're housed within healthcare systems or you're outside of healthcare systems? We'll start with Alissa W.
Alissa Wassung: Oh, my goodness, what an incredible question. That would only take us about five hours to discuss, so we'll try to keep it brief. So FIMC is an organizing entity. We organize service providers, so we don't provide service specifically, but we know a lot about how best to provide service. So, we gather together, as you heard earlier in the podcast, to advance equitable access to medically tailored meals and medically tailored groceries through policy change, research, and evaluation, and best practices. The way that that translates into our partnership with healthcare really is to think through the service itself. So, as Alyssa B mentioned, we've always partnered with health care, even from the philanthropic side of our services, where when someone comes into our organizations for service, we really kind of adopted a no wrong door entry method. They can call, their brother, sister, second cousin twice removed can call, their doctor can refer them, a health plan can also refer them, community-based organizations can refer them. So, we want to make sure that we're there for people wherever they are.
Once they come into our organizations, it's critically important that we establish that clinical continuity of care. So, we're confirming their need for the service with their healthcare professional so we're in sync and we're managing in the same way toward a specific result. And I will say, serving people with cancer, various cancers, was one of the first mission expansion populations so we've done it for a really long time. And now that we've had these decades of experience, there's been a lot of research that has started to be done on the efficacy of receiving this type of service from a community-based care perspective. And that's showing a lot of really incredible positive outcomes. Like people who get this service go to the hospital half as much, 50% reduction in hospitalizations. They tend to go home after a hospitalization if they have one, instead of to a long-term care facility. And then, of course, healthcare cost reductions. When people are getting the right food for their illness, they tend to use less services and be healthier, surprisingly, right? As healthcare has kind of slowly seen the efficacy of what we do, more and more payers are using some of the flexibilities that are available in our public insurance infrastructure like Medicare and Medicaid to pay for this service. So, we are seeing more and bigger partnerships, usually in those local contexts with healthcare payers.
But despite all of this forward momentum into integrating such a critical service into medical care for people living with illness like cancer, they’re still remaining in the margin of innovation. So, they’re not really making their way into all the parts of our healthcare infrastructure where people are needing the service. And so that’s where we, as FIMC, enter the scene advocating for that policy change that would allow more equitable access to this across the country.
Dr. Reggie Tucker-Seeley: Those are two key points, I think, sort of thinking about how to reduce costs if this is an intervention that reduces costs. But then the challenge is, how do we integrate that into the current clinical workflows as patients are navigating the healthcare delivery system? Alyssa B.?
Alyssa Baldino: A client’s provider will be referring them to us, then we also have a lot of partnerships with different community-based organizations specifically focused on cancer. We’ve had partnerships with The Susan Komen Foundation, we have a partnership with F Cancer that has a focus on referring clients who are primarily Spanish speaking and have any type of cancer. And also in California, there’s Cal AIM which Medicaid pays for meals. So, we have five healthcare partnerships, and one of our healthcare partnerships does cover cancer through that program.
And also in the same San Gabriel Valley, we have partnerships with five different hospitals. One being the City of Hope Cancer Center and that has a very specific focus on food insecure clients being discharged from the hospital and being referred to our meals and education. So, there are different funding streams and coverage for our cancer clients.
Dr. Reggie Tucker-Seeley: Which I imagine is very difficult to manage sort of thinking through all of those very complex funding streams.
I’d love to focus just a little bit on what have you both found that are some of the challenges that patients face after a cancer diagnosis? I’ll start with Alyssa B. this time.
Alyssa Baldino: Sure. So, cancer is very challenging on the client, themselves, the family. When you're going through cancer treatment, you're very sick, you're in and out of the hospital. So as a community-based organization, we provide meals for anyone who has– If you're undergoing cancer treatment, you qualify for our meals. So, when that referral comes in, we get someone started on our meals. They're on service until they are no longer going through treatment. On a weekly basis, we have a delivery driver going to the house, and they can see any differences in the client. “Oh, they look like they lost a lot of weight. Do they need more meals? Are they not able to care for themselves? Do they need a caregiver? Do we need to reach out to their case manager?” So, we have eyes on the clients. That's a very powerful piece, especially when referrals are coming to us.
And then just from a nutrition standpoint, we have multiple different meal plans that may benefit the client as they're going through these different challenges. So, we have a GI meal plan for those people that might be having a hard time tolerating food, but they need to get those calories in. Then if someone's feeling a little bit better, we just have a general wellness diet. We give a variety of meals that might be someone who's feeling a little bit better through their treatment. And then we also have a modified texture for those having trouble chewing or swallowing. We try to meet the clients where they are and really address what they need at that time in their treatment. And then additionally, we were able to provide children’s breakfast bags, because if a parent is going through treatment, obviously, we can't forget about who else is in the home and needs their needs addressed.
Alissa Wassung: One of the really important pieces of our food is its quality. As I had mentioned before, appetite can be really challenging in a cancer diagnosis, so we need to make our food as appealing as possible. We would never want to send food that people aren't going to eat. And then, where possible, implementing some client choice. A lot of our agencies tend to send their food frozen. And this is actually really important in cancer treatment because you may not feel like eating the soup, you're sent one day. So, you can kind of choose a different soup if you're getting multiple meals delivered at once and there's some sort of control that the client has. There's some agency that's really important to us. And as Alyssa said, they're providing meals to children, some agencies provide meals also to caregivers or senior caregivers. There's so many seniors taking care of seniors at this point in our country. So, we try to recognize that. And I don't know that that's anything insurance will ever pay for, although Massachusetts might have a jump on that.
And then I think hearkening back to our roots in the HIV epidemic, really paying attention to cultural competency and delivering things in a compassionate way. And that connection with the registered dietitian, being able to come back to them at any time in the intervention and say, ‘Hey, my medication changed. What do I do now?” Or “I really can't stand fish, it doesn't make me feel good, can you sub it out for something else?” Those very small but ultimately big interactions make all the difference in somebody's care when it comes to the medical tailoring piece of the intervention as a whole.
Dr. Reggie Tucker-Seeley: So, you both have either said explicitly or through your examples that it is really important for both of your organizations to meet patients where they are. I imagine that doing that, you face many challenges in making those connections with patients and getting them the food resources that they need. Can you tell us a little bit about what some of those challenges might be and how do you overcome those challenges?
Alissa Wassung: I do believe that we are not out of the woods yet on challenges in terms of accessing our services. And even some of the current regulatory structure makes it challenging for people to access our services. I think navigating the community connection is one, and keeping those relationships alive and well so you are seen as this hub to coordinate nutrition care. The other piece is just navigating the healthcare system. It's extraordinarily challenging for payers and providers, imagine community-based organizations navigating it from the outside without the access to technology and systems. So, as we've seen that kind of integration evolve over the years, we've seen the barriers, whether that be exchanging secure data or incorporating, as you said so well, like screening for food insecurity, or in our case, malnutrition, which is a better predictor of the need for medically tailored meals into a clinical workflow. And then at the point where someone screens positive, developing those systems to warmly hand off somebody to community care and make sure they're getting the nutrition care they need. So, reforming the system is probably one of the other big challenges.
And even as healthcare has endeavored to do that, a lot of the burden of incorporating into the healthcare system has been kind of put on the nonprofit side. So, an example being a medically tailored meal provider might have relationships with several Medicaid plans in a state, and each Medicaid plan might have a different system, a different electronic medical record, or a different referral system. And that nonprofit will have to figure out, from a capacity perspective, how do I participate in all those systems to get people care, not kind of the other way around. So, it's definitely something we have eyes on and provide a lot of technical assistance on for our agencies, but something that we're hoping changes as policy evolves.
Alyssa Baldino: As a medically tailored meal provider, we are trying to be that puzzle piece of food for clients. People have very complex needs out there. So, if you address one thing, you're going to need to address other things. So, we actually have a client advisory board that, clients, we elicit feedback from them. And one major thing that came up recently was that clients said, we need more help than just food. We need other resources. We have built into our workflow of referring clients out to other resources. And in particular, even though we are a food provider, we only provide one meal per day, generally. So, we've started signing up a lot of our clients for snack benefits that aren't already enrolled and then just working with our other food providers in the community. But yet it's so hard to address everything in this complex system and world.
Dr. Reggie Tucker-Seeley: I think, too, one of the things that both of your responses highlighted and that both of your organizations represent is the need for us to think at multiple levels at multiple times. And that can be quite challenging to do. So, how does each of your organizations define success? And how have you been able to achieve that success over the years that you've been working on this issue? Alissa W?
Alissa Wassung: I think when you address the totality as Alyssa B. was just thinking about it, and as you've laid out, I feel like it can be kind of overwhelming because there is a lot of need, and the needs are complex. And so, at a very baseline level, I try to remember the fact that because our phenomenal FIMC agencies exist, people going through illness across the country are fed today and then we can build from there. Where I see success is in the current policy conversation that we're having. Last September, after over a 50-year hiatus, the White House held the White House Conference on Hunger, Nutrition, and Health. And it focused very solidly on equity and on food as medicine and Medically Tailored Meals was highlighted, there were recommendations for policy change. There was the input of people with lived experience. And it was really this rallying moment 50 years after the first conference that gave us SNAP and WIC and school lunch and just like, landmark policy change for us to refocus again on what food looks like today, what nutrition means for health in our country. So now there's this kind of focus on food as medicine, and I feel like an energy that wasn't there before. So, we are hoping to use this moment to kind of further the policy needs that we have gathered over the last 40 years of service and make real change to that structure.
The other thing that I think is really important in these conversations is really thinking about our clients’ perspective and where collaboration with other systems, rather than creation of a new system, can really bring them the answer to the needs that they've evidenced. And we're thinking about that a lot as USDA and HHS are really asking: Where's the warm handoff here from the programs that already exist and the ones we need to create? When it comes to medically tailored meals, I think success there is really making Medically Tailored Meals a reimbursable benefit for people who need it in our public insurance structures and making sure it's accessible across the country. So, we're getting there.
Alyssa Baldino: We like to think that we're very successful in the community, that we attend community events with other organizations. We have a lot of partnerships. We constantly are having new partnerships to address a spectrum of diagnoses. We're always adding more to who we cover for our medically tailored meals. And so, we really think we're a mainstay community resource, and we couldn't do it, especially through the pandemic, without volunteers. And we just really expanded during the pandemic, and that really speaks to the need that is out there. We're trying to do as much as we can, and actually we're expanding to a new building to serve more people, to serve double the amount of people we currently serve because, again, the need is there, and you always hope the funding follows the need.
Dr. Reggie Tucker-Seeley: It sounds like Alyssa B.; you work directly with the clients and sort of providing them with the meals. And Alyssa W., you work more with all of the organizations in terms of how best to build this coalition and sort of help them work with the respective clients. So, can you talk a little bit about if someone wanted to partner with you? What is the best pathway?
Alissa Wassung: I would say FMIC is the coordinating center of connecting to partner agencies. If you have any questions, we have a super easy form on our website, and we will get back to you. You can also sign up for our listserv where we hold quarterly meetings that anybody can attend, usually with an invited guest talking about progress in the field, but we can serve that coordinating function. If you have someone in your circle who needs help from a FMIC agency, you can do a search on our website for that agency or look up and connect directly with folks like Project Angel Food. Volunteer, donate - these are all also ways to continue to help us across the country because we're still majority funded and supported by our communities in philanthropy.
One other way that I would say for health systems specifically to access or understand the opportunities in their state is look at what's happening in Medicaid. There's so much movement right now on the waiver front in terms of allowing plans to pay for these types of services. And state Medicaid websites are a really good resource, but definitely open to being that coordinating body for access for a variety of different constituencies.
Dr. Reggie Tucker-Seeley: And Alyssa B., in terms of folks getting directly in contact with you, should patients contact you directly, healthcare systems directly? All of the above?
Alyssa Baldino: Yeah, exactly. I can't tell you how many emails we get a week of just people reaching out, just, “Hey, can we talk?” And sometimes it's actually clients that maybe heard us on a podcast, but they live in Missouri. So, then I go to our FMIC website and connect them with resources there. But yeah, just reach out, call, email, volunteer, get to know us. We always have the need for volunteers. That's one of the best ways to also give back to your community locally.
Dr. Reggie Tucker-Seeley: My last question is about, and you hinted at this Alyssa W. In terms of the White House meeting and following up on what's going on with Medicaid, are there any policy initiatives that you're currently working on or that you're aware of that could assist with the elimination of food insecurity for those with a chronic disease like cancer?
Alissa Wassung: So there definitely are. And we really try to take a broad approach to policy working not just on the legislative side, but also the administrative side. In fact, in the last years, we've seen so much progress on the administrative side and using these flexibilities. I would say at a state-based level, there is tremendous progress using state-based Medicaid waivers to provide these services, as I just said. And the best way to understand that is to go to CMS's website or go to your state Medicaid website and take a look. It's really remarkable. Cal AIM, which Project Angel Food participates in, is just one example. There are initiatives in Massachusetts, New York, Pennsylvania, Arkansas, states you may or may not be familiar with in terms of progress on social determinants of health.
At the federal level, CMS continues to pay attention to social determinants of health and a lot of the newer regulations take into account the need to screen for food insecurity, to make sure that that question is asked of folks. We then advocate for, well, then what happens? We have to be able to give clinical providers a place to go or something to do after they identify that need. So, lots of progress there. NIH has a new research initiative that they're gaining input on through a request for information about Food as Medicine. So, lots of federal progress.
The one advocacy point I would mention here is that in two different congresses there has been a bipartisan introduction of a bill that would fund a pilot that would test medically tailored meals in Medicare, so for older Americans and those living with disabilities, and really give us the data to build a more resilient healthcare system by measuring it in different geographic populations and across different states. So, we really are looking forward to that bill being reintroduced this year in a not only bipartisan way, but a bicameral way in both the House and Senate. And when that happens, we hope you will advocate and ask for passage because it could really change the landscape of access for people with cancer across the country.
Dr. Reggie Tucker-Seeley: Great. And Alyssa B.?
Alyssa Baldino: The biggest one is Cal AIM is the Medicaid waiver because it's not permanent, it's not guaranteed for the future. So, it's really important that we utilize the waiver and show the effectiveness—which one of our healthcare partnerships has already started running the numbers, and it's working, providing medically tailored meals and education - it works. So, we're hoping that all of the data that is so far collected shows that this should be a permanent benefit and so many people, especially cancer clients, could benefit from it.
Dr. Reggie Tucker-Seeley: Well, this has been an amazing conversation and I want to give you both an opportunity to leave any final thoughts you’d like to leave with our listeners, including how to get in touch with you.
Alissa Wassung: My parting thoughts are that, regardless of policy change, FMIC agencies are here to help. Get in touch with us, make sure that we know where there's needs so that we can meet our communities where they are. And the best way to do that, at least from the FMIC central side, is by writing, [email protected] or filling out our request form on our website.
Alyssa Baldino: Go to our website if you're in Los Angeles, angelfood.org, email at [email protected] if you have any questions and it can be directed to all of our different departments, but also mine and my colleagues. Emails are all on our website. Again, angelfood.org.
Dr. Reggie Tucker-Seeley: Great. Well, thank you to Alyssa Baldino and Alissa Wassung for all of your work in helping to address food insecurity, cancer patients, and all patients.
And thank you so much for joining us on this episode of ASCO's Social Determinants of Health in Cancer Care podcast.
Alyssa Baldino: Thank you.
Alissa Wassung: Thank you.
Dr. Reggie Tucker-Seeley: And thank you to our audience for listening to this great discussion on community organizations and food insecurity. Please join us for the next episode where we will talk about Social Determinants of Health in Cancer Care on a global scale.
To keep up with the latest from the Social Determinants of Health in Cancer Care podcast, please click subscribe so that you never miss an episode and let us know what you think about the series by leaving a review. Visit asco.org/equity for the latest resources, research and more on equity, diversity, and inclusion in oncology. Thank you.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience and conclusion. Since guest statements on the podcast do not express the opinions of ASCO, the mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.
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In this Part 2 episode guest host, Dr. Reggie Tucker-Seeley, discusses the importance of the community and organizations meant to address the social needs of patients as they navigate their cancer journey and the financial burden on the household following a cancer diagnosis. Dr. Tucker-Seeley is joined by Carla Tardif, Chief Executive Officer at Family Reach and Eucharia Borden: Vice President, Programs and Health Equity at Family Reach, whose mission is to remove the financial barriers standing between cancer patients and their treatment.
TRANSCRIPT
The guest on this podcast episode has no disclosures to declare.
Dr. Reggie Tucker-Seeley: Hello and welcome to ASCO's Social Determinants of Health and Cancer Care podcast. I am Dr. Reggie Tucker-Seeley, Vice President of Health Equity at Zero Prostate Cancer and Chair of ASCO's Health Equity and Outcomes Committee. I'm joined today by Carla Tardif, chief executive officer at Family Reach, and Eucharia Borden, vice president of programs and health equity at Family Reach.
In this episode, we will discuss the importance of the community and organizations meant to address the social needs of patients as they navigate their cancer journey. There are many needs that cancer patients face and one of the biggest is the financial burden on the household following a cancer diagnosis.
We are lucky to have two change makers from the organization Family Reach with us here today. Family Reach is an organization in Boston, Massachusetts that dedicates their work to removing financial barriers with financial education, financial planning, resource navigation, and emergency funds to patients and caregivers.
Dr. Reggie Tucker-Seeley: So there is a discussion in healthcare services research now about whether the service to meet some of those patient social needs should be within the healthcare organization or the system, or whether community organizations should address those. And so, as a patient-focused organization, how does your organization partner with healthcare practices and systems?
Carla Tardif: Yeah, so that's a great question. There is not one answer. We all have to be involved in this conversation. We all have to be able to step in with financial resources, having the conversation to normalize the conversation around finances and health. One of my north stars is to make financial health a standard of care because it affects your care so much. So, yes, patients need to hear about it in the healthcare system. We partner with over 1000 cancer care centers in this country, working with over 4000 oncology social workers in those hospitals. We give them our financial education program. They have access to an online portal to talk to my team of licensed social workers and resource navigators. That is a really critical intersection with the patient.
And we partner with nonprofits, as Eucharia shared, throughout the country who are working with patients because many patients do not feel comfortable talking about their finances in the healthcare system. How is this going to affect my care? Will I get a generic drug? Will I be invited to a trial? So they say nothing. If a parent has a child with cancer and a social worker sees that they cannot provide for their children, they could actually lose their children. The children could be removed from the home. This is the fear in talking about your finances in the healthcare system.
So the advocacy organizations outside the healthcare system play a critical role in trust, as Eucharia said as well. Many of them are under-resourced. Many of them don't have the financial interventions that we have. So that partnership is critical. Then we have our website. So many people are just googling, looking up on the internet to take matters into their own hands - “How can I get financial support? How do I figure this out? Where do I get help?” So the answer really is every one of us needs to be educated and armed with the resources and the financial assistance to support patients when they have the courage to ask for help and to raise their hand that they're in trouble.
Dr. Reggie Tucker-Seeley: Are there infrastructure needs that policymakers could address here? Because it sounds like there are just so many holes in our social safety net that people are falling through. But how can policymakers help us address this issue?
Eucharia Borden: That's a loaded question, but it's a good question and it's a question that we do need to be asking. Carla is a part of the Cancer Moonshot and this is certainly something that's being discussed at that level on a number of fronts. But also as we think about the fact that people are living in different states and different counties in different jurisdictions within those counties, one of the things that is so important but so often overlooked is the power of advocacy. I think we jump to policy immediately, but I always like to think about advocacy with a big ‘A’ and a little ‘a’ because they're different but both relevant.
So if we think about advocacy with that big A, those are those big policy initiatives, things that are moving legislation forward and that kind of thing. But there's also advocacy with a little a. But it doesn't mean that it's less important, it just means that it doesn't rise to that level, perhaps of like a big policy or legislative initiative that moves forward. But what about the advocacy that can happen in communities? Because sometimes that's the thing that we really need to be doing, even as we think about something like Medicaid expansion, not something that every state did, and so even as you try to address that, well, that's going to be state dependent.
As we enter into these spaces where we think about policy, we need to think about the varying levels of that policy work that occurs. But also this is another place where we don't need to cut out patients and their families. They are some of our best advocates for change because they bring that human element to whatever conversation they're a part of, just like we're doing here, to humanize a term like financial toxicity. So there are so many grassroots ways that people can be involved and I think they should be involved.
Carla Tardif: We saw after COVID there were a lot of relief programs. SNAP benefits were expanded and housing relief and mortgage forbearance. So these are things that we had been talking about pre-COVID. It was a heavy lift and I was told we were out of our lane and I was out of my lane. I mean, I'm just sitting here shaking the trees saying, “This is what we're seeing. We've got to do something about it.” “We can't.” COVID hit “You can! We've seen it! There it is!” So that gives me some hope. So the data we are collecting, all of these programs, all of these intersections, we are really unearthing data to tell this story.
When they just cut the SNAP benefits back, we were inundated with cancer patients who are food insecure because they've lost that. COVID is over but cancer is not. And all of the things people were afraid of was COVID - fear of getting sick, isolation, job loss, housing insecurity, food insecurity, that's cancer. Those programs need to continue for the cancer community. It will affect survival rates. So policy is important.
Dr. Reggie Tucker-Seeley: One of the themes that's been woven through this conversation is the shame that families may be feeling as they are attempting to manage the financial burden of having cancer and the financial toxicity that comes with that. Do you find that patients are open about discussing their social needs and are they more likely to discuss their needs with their physician or do they prefer to have this discussion with a social worker or other members of the care team or administrative staff?
Eucharia Borden: No, not all patients are open about discussing their social needs. Not even just their financial needs but even their more broad social needs. However, when they are, they tend to discuss their needs with the members of their team that they feel most comfortable with. So these are people that they've started to feel like they can trust or people that they begin to understand sort of what their roles are and they think well maybe this is the person I should talk to because they've started to build relationship with them. But the reality is that different kinds of needs are discussed with different team members. It's just kind of how that works.
Some patients are very much unaware of who is actually a part of their treatment team. Because, as you think about someone bringing up a need, well, maybe they didn't know that they had an oncology social worker on their team because they didn't have a need that the other team member they were talking to thought rose to the level that they needed to talk to an oncology social worker. In fact, I often had the experience as a licensed clinical oncology social worker for people not even knowing that I'm part of the team. And when they did find out that I was part of the team they had no idea what I actually did.
Because if we go back to that conversation about systems, social workers are a part of many systems and unfortunately we are a part of systems where we're there when there are just problems. People think we're there just to take children. We're there to do those unpleasant things that are sometimes necessities. But I remember a patient coming to my office one day, quite unhappy about being sent to my office. Knocked on my door and came in, literally with her arms folded, sat down, and said, “My surgeon sent me to you, but I don't need a social worker. So I don't know what I'm here for. But why don't you tell me what you can do for me?” And I said, “Well, why don't we talk about why your surgeon sent you to me?” That's where I had to start that conversation because that's what she came in with. “I'd heard this term social worker. I don't know what it means here, but I know outside of here, I don't like it, and I don't want to have to talk to you.”
But after she told me the reasons why her surgeon sent her to me, she didn't trust me right away. It was one action after another because I kept showing up and kept showing up. But after a while, Reggie, this patient, would come and stop by my office just because she wanted to come and give me an update. Because she saw that I was a necessary, integral part of that team and she finally understood how to utilize me. That is a complete lesson.
When we think about people coming into healthcare, not only do they have to learn all of these new terms related to their treatments and medications and all of those things are brand new, but people also have to understand what the roles are in healthcare. Cancer is unlike so many other diseases because, once you have that diagnosis, you're spending a lot of time at a treatment center. The schedule alone is a lot to contend with. Between treatment and needing to come in, in between treatment and the follow-up appointments, and into survivorship, this continues. And so learning how to access what you need in health care is a lesson in and of itself. And too often we assume that people know how to do that, and they don't, nor should they.
So people coming into healthcare who are novice at what's happening, and we expect sometimes that they're just going to be open about their social needs and their financial needs and just become this open book, and that's not realistic. So if a patient opens up to their physician, fantastic. If they talk to the nurse, amazing. As long as they are talking to someone on that team so that whomever they disclose their issues to knows how to triage what they're saying, to say, “You know what? We've got a social worker. Let me put you in touch with her.” Preferably while they're on-site so that they can put a face to a name. So no, patients are not open. This is why. And we have to do a better job of helping them to understand how to utilize their team.
Carla Tardif: I also have to step in and say, Eucharia has told me stories about seeing patients who ‘don't need help’ visiting them in their room, visiting when they're in a hospital, they ‘don't need help’. But walking around in her big lab coat pockets with $100 grocery gift cards or prepaid Visa cards and just going in to say, “Oh, I'm just handing these out today. Here you go.” So it's not somebody asking for help. It's almost not even somebody being on the receiving end of help. It's just this kind gesture because this isn't charity. This is humanity. And it's this human moment where she says, “I see you. You matter. Here's some food.”
Dr. Reggie Tucker-Seeley: I think you both have just raised some really critical points here. And so one of the questions that I asked in the podcast series with our president-elect, Dr. Lori Pierce, around this notion that physicians are used to being the quarterback of the healthcare delivery team, that they have to lead it all, but perhaps this isn't a place where they are necessarily the leader. Sounds like what you're recommending is that perhaps all members of the healthcare delivery team should be prepared to gather this information. And then, Carla, in the example that you provided, maybe it is this notion that sort of help is just provided.
Eucharia Borden: When you think about treating the whole person, it means that, okay, look, I'm not going to do surgery. That's not what I do. That's not what I'm trying to do. There are some roles that have to be for specific members of the team. But treating the whole person means that perhaps in this moment, meeting with this professional, this is the time that feels right to disclose something. And I would like, if I'm the person disclosing, for the person in front of me not to get so flustered and not know what to do and seem really uncomfortable that I exposed my truth to them. So it's really about how we assess people, how we're meeting them, so that they begin to feel, through our behavior, even our nonverbal behavior, that we've heard this before, and we know what to do about it. We know how to get you to the people who can help you with this.
Dr. Reggie Tucker-Seeley: Many organizations that are trying to do this are concerned about sustainability. So how has Family Reach been able to be successful in this space for so long?
Carla Tardif: Sheer determination, will, and refusal to stop. We are just trying so many different things. We keep innovating. Putting a social worker into the hospital. What are we learning? Having her sit in the waiting room, have her milling around the infusion room, handing out grocery gift cards. What are we learning? Educating the social workers in the hospitals throughout the country. How can we help them? This isn't what they learned in social worker school. This was not addressed. Let's help fill that gap for you.
So I think it's just this ability to keep trying new ways to intersect with the patient and keep talking about it. For the past 15 years, I've said, I want a Super Bowl ad. I need to normalize this conversation about finances and cancer so that we can all feel comfortable talking about it. And I think people in the healthcare system haven't felt comfortable talking about it because, once they know, what are they actually going to do about it? It's better not to know.
So if we can come out and talk about our corporate partnerships with Zipcar or Hilton or all of these wonderful partners that we have, utility companies, we're not just doing this alone. We are building this ecosystem because we have a deep understanding of that patient's nonmedical journey. And we know that that nonmedical journey is being far outpaced by science. So if we keep talking about this, we can normalize the conversation and encourage patients to speak up sooner, because there are a lot of resources, Reggie. There's a lot of help out there.
Dr. Reggie Tucker-Seeley: One of the things that I learned from my research in this area is that it really is important for the people having the conversation to feel comfortable talking about this issue. And we all have grown up in different families with different values around who and when and how we can talk about finances. So how do you approach this topic for cancer patients just so that they don't feel helpless and lost as they're navigating this very, very challenging process?
Eucharia Borden: Reggie, we approach them with dignity and respect. It really goes back to that. I think about a patient who was diagnosed with stage a III gastric cancer that quickly progressed to stage IV. He is no longer with us. At the time that I met him, he was so proud, so proud to talk about how his home was paid for: "I always wanted to do that for my family," he would say. “So I made sure I worked hard all these years to make sure that if I was never here, they never had to worry about having a place to live." He had this fantastic plan in the marketplace, the healthcare marketplace, a platinum plan in the marketplace. This plan was so expensive. $1400 a month this plan costs. When he was working, he made it work, but suddenly he was no longer working. But he was the person providing for the members of this household, which was him and his wife.
One day while he was getting his treatment, I'm doing the math in my head just after a few meetings with them, and I thought, they've got this expensive plan. Yes, the house is paid for, but they've got utilities. They're coming here every day. Now, he doesn't have that income, and she's got her Social Security. The math just doesn't add up here. But it's not something they had ever brought up. And so after building relationship with them, a few appointments in, I said, "You know, you've talked to me about how important it was for you to pay for the house. You're here every day. But I have one question, “How are you eating every day?" And literally, his wife's eyes welled up with tears. It was the question that no one had asked because on the surface, why do we need to ask? They have insurance, so their bills are paid. They're here on time. They're not complaining, they're not raising their hand, as Carla said, so they're good. And they weren't.
So it's really thinking about how sometimes we focus on the people that we assume have the issues, and maybe we're right, maybe we do know the people who need us, but it's thinking about how we assess to make sure that people aren't falling through the cracks because of our own assumptions. So how do we approach patients? Well, we approach them equitably, first of all, to put our own assumptions aside and ask the questions that we need to ask because in this case, had we not asked, I can't even imagine what this would have been like. This is a person getting some very serious drugs, and if a body is not well nourished or nourished at all, how are we expecting treatment to be effective or for someone to be set up for success to even get through that treatment in the first place?
And also keeping in mind that getting to know this patient meant dignity and respect were the things that he cherished and so many of our patients do. So it's meeting them in that place and understanding that when we think about things like cultural humility, we need to bake that into our approach to patients, and that's what really matters.
Carla Tardif: And I would also add, a lot of hospitals are saying they do an assessment in the beginning or social determinants of health screening in the beginning, and that's wonderful, but the patient does not know in the beginning what their reality is going to be. So as we're talking about checking in and assessment at Family Reach, and I would encourage everyone to do that, keep checking in. Check-in in three months, check-in in six months. Ask the question differently. What has changed? Everything. So it's not just a one-time first-appointment assessment check-in. It has to be consistent because that journey changes dramatically over the years of treatment.
Dr. Reggie Tucker-Seeley: Well, this has been an amazing conversation. I've learned some things about financial toxicity, and again, I was an academic researcher in this space, and I thought I learned all that I was going to learn. But you two have taught me a lot about ensuring that we hear this from the patient's perspective. And so do you have any final thoughts you'd like to leave our listeners with?
Carla Tardif: Thank you. And thank you for opening your podcast to us so that we can shed light on what we see every single day. As you can tell, we are passionate about it, we are determined about it. We have devoted our professional lives to it. And I can say Family Reach has been around for 27 years. I've been doing this for 16 years and I can honestly say I feel like we're just getting started.
Family Reach has proven our financial interventions work. We are collaborators. We are innovators. I would encourage anybody in this space that wants to learn more, wants to work with us, knows patients that need help, please reach out to Family Reach. We are here to do this together. It is the only way we're going to make a dent in financial toxicity. One out of three adult cancer deaths in this country could be prevented by removing socioeconomic barriers. That's what we do and we can't do it alone. So thank you.
Dr. Reggie Tucker-Seeley: How can folks find you on the web?
Eucharia Borden: We can be found at familyreach.org.
Dr. Reggie Tucker-Seeley: Great. Thank you both Carla and Eucharia for joining us for this episode of the ASCO Social Determinants of Health and Cancer Care podcast.
Eucharia Borden: Thank you so much for having us.
Carla Tardif: Thank you, Reggie.
Dr. Reggie Tucker-Seeley: And a special thanks to our listeners for being a part of this conversation on the importance of community and organizations being a necessity for cancer patients after diagnosis. Please join us for the next episode where we talk to a panel on the importance of community organizations' capacity and infrastructure when addressing food insecurity.
To keep up with the latest from the Social Determinants of Health in Cancer Care podcast, please click subscribe so you never miss an episode, and let us know what you think about the series by leaving a review. Visit asco.org/equity for the latest resources, research, and more on equity, diversity, and inclusion in oncology. Thank you.
The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
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In Part 1 of this episode guest host, Dr. Reggie Tucker-Seeley, discusses the importance of the community and organizations meant to address the social needs of patients as they navigate their cancer journey and the financial burden on the household following a cancer diagnosis. Dr. Tucker-Seeley is joined by Carla Tardif, Chief Executive Officer at Family Reach and Eucharia Borden: Vice President, Programs and Health Equity at Family Reach, whose mission is to remove the financial barriers standing between cancer patients and their treatment.
TRANSCRIPT
The guest on this podcast episode has no disclosures to declare.
Dr. Reggie Tucker-Seeley: Hello and welcome to ASCO's Social Determinants of Health and Cancer Care podcast. I am Dr. Reggie Tucker-Seeley, Vice President of Health Equity at Zero Prostate Cancer and Chair of ASCO's Health Equity and Outcomes Committee. I'm joined today by Carla Tardif, chief executive officer at Family Reach, and Eucharia Borden, vice president of programs and health equity at Family Reach.
In this episode, we will discuss the importance of the community and organizations meant to address the social needs of patients as they navigate their cancer journey. There are many needs that cancer patients face and one of the biggest is the financial burden on the household following a cancer diagnosis.
We are lucky to have two change makers from the organization Family Reach with us here today. Family Reach is an organization in Boston, Massachusetts that dedicates their work to removing financial barriers with financial education, financial planning, resource navigation, and emergency funds to patients and caregivers.
Thank you both for being a part of our Social Determinants of Health podcast series in this episode focused on community and organization.
Carla Tardif: Thank you for having us.
Dr. Reggie Tucker-Seeley: Let's start the conversation with the question that we like to ask all of our guests. What does social determinants of health and cancer care mean to the both of you?
Carla Tardif: It's a great question and there are so many buzzwords now around this topic, so I really appreciate the opportunity to even define some of them, like social determinants of health, like financial toxicity, like health-related social risks and how are they different and what do they mean. We talk about social determinants of health being more about societal impact on people according to where they are born, live, work, play, and pray. And we talk about financial toxicity as the financial impact that a cancer diagnosis has on a family. Financial toxicity is a word that we say often and that really is about cancer affecting your finances and your finances affecting your cancer. And what does it mean when work is stopped, income is cut, out of pocket expenses, the cost of care, and how does that affect your ability to access care and adhere to treatment which will affect your survival rate? And then I'll pass it to you Eucharia, because I love her definition of social determinants of health.
Eucharia Borden: Thank you so much for having me here today. I think one of the first things that we need to put out there is that our professional language is full of jargon, and patients often don't understand things like social determinants of health, financial toxicity, what do these things mean to them? Which is why at Family Reach, we talk about meeting their basic needs, meeting their needs in areas like food, transportation, housing, and utilities, because that is also something that's important when you're approaching patients and working with patients who really do have financial toxicity - to make sure that you're on the same page with them about what their needs are and therefore what kinds of problems you're helping them to solve.
Dr. Reggie Tucker-Seeley: My first question is for you, Carla. Can you take us to the beginning? How did Family Reach get started and what led you to work with this organization?
Carla Tardif: Family Reach was started by two families out of New Jersey who both lost their child to cancer, pediatric cancers. And they saw firsthand spending so much time in the hospitals overhearing conversations that families did not have heat, they were being evicted, they were hungry, they couldn't pay to get out of the garage after they'd been there for weeks. So the families both saw this side of cancer and when their children passed, they got together and said, we need to do something about this. And they started Family Reach.
And how they started was they raised money. They did a golf tournament, and they took those funds back to the hospital social workers and said, this money is not for the hospital. This money is for the families that you interface with that we know are hungry, are in homes without heat, and cannot put gas in the car to get to and from treatment. That's how it started. They functioned like this as a volunteer organization, a pure labor of love for 12 years. And they had three hospital partners that they worked with in New York; New York Presbyterian, Memorial Sloan Kettering, and then Dana-Farber.
I lost a dear friend to brain cancer not long out of college. My friend Pat Kelly played in the NFL. He was diagnosed with brain cancer. He would bring Jets players through the pediatric floors to meet the kids, as so many athletes do. And Pat would call me to say the same thing. “Carla, I just saw a husband and wife fighting at the vending machine. They're so hungry, they have enough change for one snack, and they cannot agree on the snack. Do something.” He called me once because there was a single mother crying on the curb. Her two-year-old had brain cancer and she had no money to go pick her four-year-old up at preschool. And she was just scared and lost and done. So he kept calling me to tell me to do something.
A few weeks before he passed away, I went to say goodbye to him. I was holding his hand with a few of our college buddies in the room. He squeezed my hand, and said, “Look me in the eye and promise me you are going to fix this.” So clearly, having no idea what this was, I promised him that I would fix this. So I spent the next two years really searching, what is this? And I found Family Reach. And I approached them and said, told them my story, and said, “Can I help you? You have a model I can scale.” Work with the hospitals. They identify the families, pay bills directly, literally get in there and have a tangible impact on that day. So I spent two years meeting with families, meeting with social workers, doing grocery shopping, sitting in hospital rooms, really trying to understand this side of cancer that people don't talk about, where there is a lot of shame and a lot of fear, but clearly affects their ability to survive and affects the whole family. That was 16 years ago.
Dr. Reggie Tucker-Seeley: 16 years ago. Speaking for the cancer community, we are so grateful that you have kept your commitment to your friend at the bedside.
Eucharia, you are the Vice President of Programs in Health Equity, and several organizations have created senior roles to lead health equity efforts, really to address some of those examples that Carla was mentioning. We know that cancer doesn't discriminate necessarily by socioeconomic circumstances, but the issues that Carla mentioned are disproportionately impacting certain groups. So what does health equity mean to you at Family Reach and what are your responsibilities in this area?
Eucharia Borden: There are so many organizations that have created roles focused on health equity, some of them more specifically than others. Some of them are kind of rolled up into diversity equity and inclusion positions. Some are more specifically focused on health equity, and they're not the same I have to say. One of the things that I love at Family Reach is that so many people talk about doing the work, and we're actually doing the work. That's what's different about our health equity initiatives.
In fact, through our cancer equity initiative, we're actually meeting patients where they are. And as a social worker, meeting people where they are is something that's like Social Work 101. It's one of the first things they teach us. And then through the early days of the pandemic, this phrase of ‘meeting people where they are’ was suddenly mainstream, which is kind of surreal for me and other social workers because we're like, “Wait a minute, that's what we've always done!” And unfortunately, because it has become this mainstream term to meet people where they are, it's not actually happening all the time.
And so as I think about what health equity means for Family Reach, it means not just having actions that are performative, but to actually say, you'd like us to tell you about what our cancer equity initiative means. Let me give you the examples of how we're meeting Black and Hispanic patients in particular. Our cancer equity initiative, for example, is focused in two areas. One of those is through our community partners. And these community partnerships are partnerships that we form with organizations that are serving 90% Black or Hispanic patients with cancer.
And trust is the other thing that I have to bring into this conversation. It's really important to establish trust with the people that you're serving. Let's face it, like, you started us off with this question, Reggie, cancer doesn't discriminate, but many of the centers where people get their care, well, they do. And so even when it comes to seeking help. People are often not doing that for a variety of reasons, but one of those reasons is because, unfortunately, their system’s involvement, even before coming into healthcare, has taught them that systems are not set up for me, they're not set up to help me, they're not here to meet my needs.
And so what we've done is partnered in communities where people already have trust with organizations that are meeting some of their other needs, but maybe those organizations need help in meeting the financial needs that they have. And that's where we come in. So that patient or that patient and their family can still go to their trusted resource. And that organization is now working with Family Reach to meet those financial needs so that the patient may or may not ever know that they were working with Family Reach. And you know what? That's okay as long as their need was met. So that's one way that we're really meeting people where they are in those communities.
Dr. Reggie Tucker-Seeley: Thank you so much, Eucharia, for giving us that detail. You hit on so many key points here. It's also important that the leader of the organization is on board with these efforts so that the organization truly is viewed as a trustworthy partner in the community. So, Carla, as CEO of Family Reach, what do you see as your role in the effort to achieve health equity?
Carla Tardif: It's always been innovation. It's always been collaboration. It's always been awareness. This has been a lonely place to be for a long time, but now there are so many people really invested, engaged, and excited to have the conversation. So for us to go back and say, “We've been doing this for 27 years, and we are so excited to share our financial interventions and to show the proof we have that they're working and to make sure that we collaborate with everybody, anybody in this space, so that we can scale and that we can reach every patient that needs us.”
We started out just giving emergency relief grants, and that's wonderful. That is a critical Band-Aid. And for so many families, until they have that financial check to put groceries on the table or to get another few months of rent, until those basic needs are met, they can't think about cancer care. They can't think about anything else. So for many, many years, we were just emergency relief. Then we said, “Okay, now what? How do we reach patients sooner?” Patients come to us, they're calling, screaming because there's a repo guy in the driveway taking their car. They cannot get to treatment the next day. How do we reach people before that?
So, as the CEO, awareness of this problem, helping to wipe out the shame, say, this is part of cancer, say, you did nothing wrong, and to let the cancer community know that we see them, as Eucharia said, that is our tagline. We see you. You did nothing wrong. And we're here. This is part of cancer. Financial assistance wasn't enough, financial education needed to happen. Resource navigation. Resource navigation is something we've done for a long time and we're really building right now. And we have people that work with us that say, “You don't do resource navigation, you do resource activation.” We're not here to tell patients, here's a list of resources. Best of luck to you. We are here to say we understand your needs. We are going to plug you into a resource, hold your hand, and make sure you can actualize this resource that is available. So innovation is also a really big part of what I do, and I'm thrilled at the change in the progress.
Dr. Reggie Tucker-Seeley: Can you define how Family Reach defines financial toxicity?
Eucharia Borden: As we think about financial toxicity, going back to something Carla said earlier, which was cancer affects finances and finances affect cancer, it's really that bi-directional relationship there. It's about what cancer does to your finances in terms of your bank account. I had a patient say to me once, "Do you know what my credit score used to be and what it is now? I had a credit score that was above 800 before I was diagnosed with cancer." And he said, "I don't know if I'll ever get back to that place, and that's something that mattered a lot to me.” So for him, he measured financial toxicity, really looking at what his credit score looked like and what it took for him to get to that place.
If we think about another patient, it might not be their credit score. Some patients said to me it really meant a lot to them that they had built up a savings for an emergency, especially when they had families. And to now look at how they were depleting their savings—I mean, they really felt like they were in crisis. I come from a long history of working in hospitals directly with patients, and financial toxicity, the way that experts talk about it does tend to be an umbrella term. But I like to think of it in terms of these concrete terms and what it means in the life of a cancer patient because I think that it just clearly illustrates what we mean even more. It is a crisis. It is something that is not that person's fault, but let's face it, people often feel like it is their fault. “This is happening, yes, because I got cancer, but I should have managed my finances better.” They start to "should" on themselves. “I should have planned for an emergency,” when maybe they didn't even have the resources to do any of that emergency planning like they're talking about now.
So as we think about what it means, I think we also have to keep in mind that the way we talk about it at that professional level may not be the same way that the patients we serve talk about what financial toxicity means to them, and what it means to them is having to now live a life that is very different than the life they were living before they heard those words that they have cancer.That matters. It matters whether you’re a single person, whether you have a family, or what that family makeup is. What it means is that you’re doing life differently. Cancer, not only does it show up in a life that’s already happening, when there are already issues that a person is facing, so in this case, finances, it tends to exacerbate any of the problems that were there or widen the gaps that people were already experiencing. If you’re living day to day, to have something like cancer show up in your life uninvited, it really turns everything upside down. This is what we’re talking about when we talk about financial toxicity.
What we’re seeing as we talk to the patients that come to us for help or the professionals they come to us on their behalf, we’re looking at people who are making it through the day on one can of food. They’re trying to figure out ‘how I’m going to go to a hospital today and get six or eight hours of chemotherapy and I didn't eat well yesterday. And I’m going to be in a hospital all day and I don’t have money to bring a lunch with me or to pay for the food at the hospital.’ These are the things that people are thinking about.
31% of patients we find that come to us are cutting their medications in half. So as we think about even the impact of financial toxicity, this really has an impact on a patient’s ability to even adhere to this treatment regimen. We’ve got all these advances in cancer treatment, but it’s not really accessible fully if your basic needs are not met.
Dr. Reggie Tucker-Seeley: A story I often tell related to financial hardship in cancer is that when I used to travel all over the country as an academic researcher doing research in this area, everyone I met on planes and airports had a story about how navigating our health care delivery system in this country caused them or someone they knew substantial financial loss. So do you think most people are aware of just how prevalent financial hardship is for families managing a cancer diagnosis?
Carla Tardif: No, because people don't talk about it. They're ashamed to talk about it. And I also think you said you're thrilled that the financial toxicity word has caught some popularity, and that took a while because the term used to feel like a cost of drug conversation, so people would think, financial toxicity, drug costs. We have beat this drum for years to really share the formula—loss of income. If you are a single parent with cancer or one of your children has cancer, you cannot work. You have no income. You have all of these out-of-pocket expenses, child care for your other children, transportation back and forth to the hospital, the cost of care. And so to be able to let people know that this financial toxicity is far more robust than a cost of care conversation, I think is what has allowed it to catch wind.
Reggie, all of our families will tell us that it's the financial crisis that scares them more than cancer. Every single one of our families that I have talked to over the past 16 years has said that. The cancer is taken care of. There are great healthcare systems, the science, the healthcare providers - there are people, educated, smart, caring people, taking care of the cancer. But when they leave the hospital and they go home to that life that you said was there before they were a patient, now they're a parent, now they're a child, whatever their title is outside the hospital, there is nobody there, and a lot of shame and a lot of fear. That is the crisis that scares them more than cancer.
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Guests on this podcast express their own opinions, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
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In this episode, guest host Dr. Maysa Abu-Khalaf, Director of Breast Medical Oncology at Sidney Kimmel Cancer Center – Jefferson Health examines the role providers play in collecting social determinants of health data from cancer patients to assist with receiving the care they need. Dr. Abu-Khalaf is joined by Dr. Luis Raez, Co-Director of Memorial Cancer Institute of Florida Atlantic University and Whitney Renau, Patient Care Coordinator of Hematology and Oncology from North Florida and South Georgia Veteran Health Services.
TRANSCRIPT
The guests on this podcast episode have no disclosures to declare.a
Dr. Maysa Abu-Khalaf: Social Determinants of Health in Cancer Care podcast. I'm Dr. Maysa Abu-Khalaf, Director of Breast Medical Oncology and Interim Chief of Cancer Services at the Sidney Kimmel Cancer Center at Jefferson Health. I'm joined today by Dr. Luis Raez, Co-director of the Memorial Cancer Institute at Florida Atlantic University and Florida Cancer Center of Excellence, and Whitney Renault, patient care coordinator of hematology and oncology for North Florida and South Georgia Veteran Health Services. Thank you both for being a part of the conversation on data gathering.
Dr. Luis Raez: It's a pleasure to be here.
Whitney Renau: Thank you for having me.
Dr. Maysa Abu-Khalaf: In this episode, we will discuss the challenges and barriers to collecting and documenting social determinants of health information for patients after a diagnosis of cancer. Our guests will share their experience in collecting social determinants of health information from patients and share who in their clinical team has been tasked to assist in obtaining this information. Last episode, we discussed data gathering from a patient's perspective, but we'd love to know why you both believe it's important to address social determinants of health and social needs when providing care for your cancer patients.
Dr. Raez, would you like to just give us your thoughts on the importance of social determinants of health?
Dr. Luis Raez: Yes. Thank you. I am a medical oncologist. I'm a director of the cancer center here at Memorial and South Florida. It's a public healthcare system. I practice lung cancer. And as much as the social determinants of health topic is a topic that many medical oncologists believe is not ours, that is in the realm of the social worker or somebody else, there's no way to avoid that. Because when you are providing the best target therapy of the world or the best immunotherapy of the world, and the patient has insurance, and you see that the outcomes are not the outcomes that you see in the clinical trials, you see that there is something else other than the biology that has an influence. That is why I consider the social determinants of health very important. In our own cancer center, we have several publications about target therapy, immunotherapy in black patients or Hispanic patients that clearly show inferior outcomes, despite the fact that they are getting the same drugs, the same doctors, the same care that we provide. That's why we're considering our healthcare system, as I said, Memorial Healthcare system, that very important topic that we have been trying to address for the last years.
Dr. Maysa Abu-Khalaf: Thank you so much. Whitney, would you like to add to this?
Whitney Renau: Absolutely. Exactly. It indirectly affects all the outcomes or overall disease survival. If they can't get to the treatments, if they don't eat well during the treatments, if they don't have support during the treatments, it's going to negatively impact all of the outcomes. We do a great job in being able to pay for the drugs and have great regimens, but if we can't get them to the drugs and the regimens and keep them coming, they're going to have overall poor disease survival rates.
Dr. Maysa Abu-Khalaf: Absolutely. Thank you for that. Well, let's touch on the physician and clinician perspectives. Dr. Raez, there has been a lot of interest in evaluating the impact of SDOH and patient social needs on cancer care delivery. Can you tell our listeners how you ask your patients about SDOH and their social needs and does it happen during the clinic visit or at a later time point?
Dr. Luis Raez: The point of collecting the data of SDOH is the first step because even though you don't have an idea what is the impact of this, that is why in our healthcare system, we are 2000 doctors, we have created a dashboard of SDOH, social determinants of health, that basically we collect 13 of them from social connections, tobacco use, depression, transportation, physical activity, etc.. So this is a dashboard that is embedded in the EMR. So when the physician opens the EMR, if he has, on the left side, the vital signs, the dashboard of SDOH is on the right side with the medications, allergies, everything. So in that way, the physician cannot really ignore it because it's part of his dashboard.
So we figured out this working with Epic Systems, Epic is one of the most popular EMRs in the United States and this has the capability to do that. So, we were working at the level of the healthcare system, not only for cancer but for everything else. Now that we have these 13 SDOHs, what we do is we are trying to flag a green or red, depending on what deficiency the patient has. You know, if the patient has food insecurity, there is a red. If the patient has transportation it is a green. So the physician can easily see if there is any red in the SDOH dashboard that can bring awareness about if there is something wrong that needs to be addressed. And as we said before, I cannot expect that the patient will have a great outcome if I'm looking at a bunch of reds in the SDOH dashboard, despite the fact that I have the best chemos in the world on the left side.
Dr. Maysa Abu-Khalaf: And are you as a physician collecting this information during the clinic visit? Or is there someone in your office that does that before they go into the clinic space to see you?
Dr. Luis Raez: The dashboard, we already have the template of the dashboard, and then it's being populated by the social workers. When you get a new patient, you come as a new patient in the cancer center, you interview the social workers, the nutritionist, the multidisciplinary team, and then we start to populate the dashboard. But as you understand, also collecting data one time is not enough. The necessities can change. The patient may have transportation one year, next year, no. So, once that dashboard is created and kept by the social workers, the medical assistants in each visit briefly ask the patient if something has changed. The same when they change age, any of your medication has changed, and the medical assistant has to fix it if you have a new drug or not, the medical assistant keeps track of the dashboard whether it is updated or outdated.
Dr. Maysa Abu-Khalaf: Okay, wonderful. So it's continuity of care. It's not something that you just would do one-time point. Every time they come in, the MA makes sure that it's updated, and you as a physician, during the clinic visit, will address any of the social needs that are identified or flagged to you.
Dr. Luis Raez: Yeah, or if I cannot address them because some of them are out of my expertise, for example, the patient may be the patient lost insurance. Now it's January 2, and the patient lost insurance. But at least if I see that red flag, I refer the patient to the social worker immediately because now we need to fix insurance. The patient just lost insurance or something like that. You cannot pretend to ask the doctors to fix these things by themselves because the doctors are really very reticent, very negative about doing more clicks. That's why when you present this to the doctors, the first reaction is everybody goes to the back like, “Oh, my God, they're giving me more work.”
But it doesn't have to be like that. That's why we work as a team. We want you, at least at the minimum, that the doctor has to do, is notify the social worker, send a- it’s a couple of clicks in the EMR. So we know that this needs to be addressed. We are not asking the doctors to fix things because otherwise, the doctors get against this because they think it's more work for me in the less time, and I don't get paid anything extra, and it's not my problem. It's not like that. It's the same thing when you see that the blood pressure is high, and you notify the nurse to give a pill. Now the SDOH has red flags, and I will notify the social worker to please fix this or the nutritionist or somebody else in the cancer center that can address this.
Dr. Maysa Abu-Khalaf: And I think that's very important because this comes up a lot. How much work is it? Can you really fit it in during a clinic visit? And the way that you've outlined this, it's a team of clinicians and staff that need to address this collectively and longitudinally. It's not a one-time point where you address it and you move on.
Whitney, can you tell us, since your work has been with veterans, are there templates or guidelines that you found useful when asking patients about SDOH and social risks?
Whitney Renau: Great question. Thank you. And that sounds like, again, one of the reasons my job exists is to help physicians, such as yourself, be able to keep determining along the continuum of care what's going on with the vet and if they are having changes. We use the NCCN distress thermometer and problem list, and the nurses actually in our infusion are seeing every single patient and assessing them upfront, and then if they score higher than a four they're being sent to the social worker to be able to assess for needs support. And then we actually are creating a consult to kind of flush out of that assessment into also mental health providers. Depending on what, as Dr. Reyes was saying, where the needs are, we might have consults to both social worker and the mental health team.
I also do stem cell transplants so we do a very thorough assessment of what they're needing, if they have good social support, economic ability to go through the transplant process, as well as emotional or educational understanding of what they're facing. And I'd like to see us be able to do an assessment like that for each individual. But I very much agree instituting it along the continuum of care is needed. We need to do more, better at that for sure.
Dr. Maysa Abu-Khalaf: Wonderful, thank you. And my next question is obviously there's a team of clinicians and that might change depending on the practice and the patients that we serve. But do you find when you're trying to discuss social needs with patients, Dr. Raez, do you feel that they are comfortable addressing these questions with you, for instance as their treating physician or do you find that they're more likely to talk to the care coordinator or the social worker about these topics? They're sensitive to some patients.
Dr. Luis Raez: In general, no. As I said, for me it's more to educate the doctors to be more open to talk about these things because I feel it's part of our responsibility too. But certainly, we don't have the expertise of the social workers. For example, if there are issues with insurance and we don't know if insurance covers the treatment or not, things like that or for example if my patient has transportation issues, I know that there are a lot of transportation options and NGOs, I don't know which ones are. I know for example, that at one point there were some Uber rides for free. But our social workers are the ones that keep track of the resources available and that may help.
And the other thing that we did also is we have a link for resources because nobody really has in their memory all of the resources available and certainly we don't want to miss a potential resource. We have a link to a database that the social workers keep all the resources available, that they have been able to collect in the area, that there is a grocery store that provides food for veterans or something. In that way, all of us can always check if we have some interest in- to participate in the process to help the patient, how to help the patient. Because it's important also to have an updated database of resources that can be useful because a lot of times we don't help the patients, not because there are no resources but because we didn't know that. For example, about these Uber or Lyft rides, I didn't know about that until one patient told me, “Hey, by the way, if they don't have transportation, send your patients with these resources.” It's been very important to be aware of the resources that we have.
Dr. Maysa Abu-Khalaf: And I think you touch a very important point as a lot of it is as clinicians and providers, when we see our patients, we need education as well about the resources that are available in the healthcare network and the community. So that when these questions or social needs come up during a clinic visit, that we know that we can reassure them, that we'll link them with a social worker, with a care coordinator that can help them. It's often the providers are not always up to date with this information. So part of the process would be providing some educational information and updates about the resources so that they can discuss these as well with their patients when they're referring them to social work or care coordination or a navigator as well can help with that process.
So, Whitney, how about you? Do you face challenges making connections with patients and getting them their resources during the VA system?
Whitney Renau: Yeah, it's interesting. I had almost the exact same scenario that Dr. Raez was speaking of with the Uber. I was not aware of one of the resources that we had and that there was an Uber program. And so, again, I second that as far as just making everyone aware of it. We have 15 fellows, so I am constantly educating them on all the resources and they cycle through. So having those updated all the time is definitely a challenge. I think whether it's within a veteran system or not, large systems, just inevitably your resources are going to change continuously. So having somebody update that.
I would say the thing unique to maybe the veteran population that I've found, because I've worked in the private sector and the academic sector and now I'm in that with veterans, is they have especially at the beginning of the visits and when they first meet with the providers and even the social workers shared with me, when they're not familiar with the team, they have a bit of a generational and institutional kind of stigma of not wanting to present as weak. I think it's kind of unique to the veteran population.
So myself and the other care coordinators, I feel, kind of play a pivotal role because we develop the relationship with them. We're on the phone with them all the time. We're meeting with them in the clinic so they begin to trust us and so sometimes that will come out. Again, I think that's a huge part of why reassessing across the continuum is so important because they'll walk into their first visit feeling pretty strong, “We're going to beat this, I'm going to do this treatment.” And then for all, you know, three months down the road, their family has left, they don't have a ride, they have nowhere to live, they're out of food or money, and they're not going to share that with just anyone, but they will once they begin to trust you. And I feel like that's a huge part of my role as a care coordinator.
Dr. Maysa Abu-Khalaf: Thank you. I think that's very important that you point out that those social needs also change. Someone can start out with and they have the support, and then halfway in between, something happens. And if we don't ask again, patients may not feel that's something to address with their physician or somebody, a provider in the clinical setting.
So, Dr. Raez, it looks like you have a good setup that across the health system that you work in through Epic and you have a platform. So what would your advice be or what tips can you provide to clinicians and other practices where they may not have that, on how to start to incorporate addressing social determinants of health and social needs during the clinical flow and the clinical process? Do you all start it all at once or incrementally?
Dr. Luis Raez: No, I think they can go through the same process. It doesn't matter if you don't have this Epic EMR. We don't want to advertise Epic. There are other EMRs in the United States. But as long as we start this conversation, if you don't know what is the data, how are you going to fix something that you don't know? The minimum is to start to collect the data, and now it's not enough to collect the data. For example, we are not happy only collecting the data and updating the data. Now we really want to show that collecting this data makes a difference in the outcome of the patients three or four years from now. That is the next step.
But also we have to recognize that Whitney and myself, we work for $3, $4, or $5 Billion dollar corporations, so we have the resources to do this. But 80% of cancer patients are out in the community, so we really need help from the government. I hope that the ASCO and other institutions keep pushing. For example, we already have from Medicare these Z codes. The social determinants of health have the Z as in zebra codes that already exist. But for example, we don't get reimbursed for that because maybe if I have my lung cancer patient that has food insecurity, transportation, and I put today the Z codes, Medicare pats me in the back, but doesn't make a difference. I'm only reporting. But maybe one day they have to recognize that institutions are investing time and effort to collect the Z codes and to document the Z codes and even have interventions. So hopefully they can maybe give reimbursement for these smaller cancer centers. Smaller practices can get more resources than we have so we can implement these types of dashboards and programs. Because I'm happy with what we are doing, but I also understand that we need to do something that makes a difference for most of the patients. Not only for patients from academic centers or large corporations like us.
That's why I think it's important also for the legislature and the government to give us a hand. We need more resources to address the social determinants of health and as I said, not necessarily to hire more social workers, but the government already, for example, has Z codes. Maybe one day we can get reimbursed in the Z codes. The doctors will be more eager to intervene because remember, we get paid by what we document, what we bill with the coding. So that's why I think that's also important.
Dr. Maysa Abu-Khalaf: Thank you. This brings up a point where often we're all looking for the reimbursement, we're all looking for the data to support that this in fact affects outcome. But the problem is, if we don't go through the process right now of collecting the data and following, as you said, for a few years upfront, it's hard to ever get to the point where we know for a fact that our interventions have an impact. My thought is always is that we go in parallel and we do what we have to do today and look forward to more data in the future as we collect this.
The other point is, it's not just, as you said, collecting data. So Whitney, what does success look like for you when you're trying to address a patient's social needs? And are there limitations sometimes where you collect this information and you may not have direct access to the resources that the patient needs to address these issues?
Whitney Renau: Absolutely. I think you hit the nail on the head. Yes, I can collect the data and know what they're needing, but unless I have a resource and a program to guide them towards, to be able to support them with that, then if anything, it causes a little bit of burnout, I would say, on nursing in particular. Because you're a little stressed that you're not able to provide services to them. So if we could have a consistency of process and screening all of them and then identify the needs and have identified those commonalities of needs, at least you would be able to have some common programs like the ride-sharing program like we were speaking about with Uber and certain resources that are common within those patient populations. Then we could identify that and have funding towards those types of programs. I think that would be the ultimate goal.
Dr. Maysa Abu-Khalaf: Thank you. So do you both have any final thoughts you'd like to leave our listeners with?
Dr. Luis Raez: I'm very happy to participate in this podcast. I think it's very important that all of us start to collect the data as step one and to make everybody aware that this is a real issue, that there is an impact on the survival of the patients, and this is something that needs to be addressed. And the outcomes are not going to be the same for most of the patients because most of the patients in the community unless we address the SDOH in every patient.
Whitney Renau: I would kind of just second that. And I would say my profession basically, its inception was because of social determinants of health because of populations needing navigation, and so I kind of owe my entire profession to being able to be that support throughout that continuum. So I just think with more discussions like we're having, hopefully, that brings attention to the importance of it. And like Dr. Raez said, collecting the data so that we are able to provide that and have that message sent forward to be able to get more resources and identify those resources I think will just cause better patient outcomes.
Dr. Maysa Abu-Khalaf: Well, thank you both Whitney and Dr. Raez for joining us for this episode of ASCO's Social Determinants of Health and Cancer Care podcast. And thank you for all the wonderful work that you do for the patients and for helping us with this process.
Dr. Luis Raez: Thanks for having us.
Whitney Renau: Thank you for having me.
Dr. Maysa Abu-Khalaf: And thanks to our listeners for being a part of this conversation on data gathering. Please join us for the next episode where we talk to a panel on the importance of community organizations, capacity, and infrastructure.
To keep up with the latest from the Social Determinants of Health and Cancer Care podcast, please click Subscribe so you never miss an episode, and let us know what you think about the series by leaving a review. Visit asco.org/equity for the latest resources, research, and more on equity, diversity, and inclusion in oncology.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
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In this episode, guest host Dr. Leslie Hinyard explores the importance of collecting social determinants of health data from patients to assess needs and the best practices to collect this data in an oncology setting. We enlist expert insights from Wenora Johnson, a cancer survivor and patient advocate, and Krista Nelson, an Oncology Social Worker at Providence Health and Services and past President of the Association of Community Cancer Centers.
TRANSCRIPT
The guest on this podcast episode has no disclosures to declare.
Dr. Leslie Hinyard: Hello, everyone, and welcome to ASCO's Social Determinants of Health and Cancer Care Podcast. I'm Dr. Leslie Hinyard, Chair of the Department of Health and Clinical Outcomes Research and Executive Director of the Advanced Health Data Institute at the St. Louis University School of Medicine. I'm here with Krista Nelson, past President of the Association of Community Cancer Centers and an Oncology Social Worker at Providence Health and Services. And also, Wenora Johnson, a cancer survivor, and patient advocate. Thank you both so much for joining us in this conversation on data gathering, the patient's perspective.
And we're going to dive right in. Social Determinants of Health, or SDOH, as we like to refer to it, represent nonmedical factors that affect health, that is, the characteristics of where we live, work, and play that influence our health. These social determinants are only recently being explicitly considered in medical context. Currently, there's no consensus on what questions should be asked of patients, who should be asking questions about SDOH, and how the information will be used to improve patient care.
In this episode, we will be discussing the importance of collecting SDOH data from patients in order to assess needs. We hope to discuss best practices to collect SDOH data in an oncology setting from both the patient and provider perspectives.
Now, I'd like to start with you, Krista. Social Determinants of Health have been a topic at the forefront of public health conversations, especially with COVID-19. Can you tell our listeners how you define this term?
Krista Nelson: Yes. Thank you so much for checking in and for this opportunity to talk about Social Determinants of Health. As an oncology social worker, we've known that Social Determinants of Health impact patients' outcomes, and we see it every day. And the National Academies of Science, Engineering, and Medicine came out in 2019, right before the COVID-19 pandemic, they came out with a report talking about the importance of integrating social needs care into the delivery of health care to improve the nation's health. So, when I think about Social Determinants of Health, just like you had just said, it's the environment or the conditions in which people are born, grow, work, worship, live, and age. And it's how all those forces and systems shape the conditions of their daily life. So, when I think of cancer patients and Social Determinants of Health, I think of socioeconomic status, education, job security, food stability, housing, social inclusion, and all the environmental factors that really construct a patient's environment.
Dr. Leslie Hinyard: Thank you so much. Wenora, as a cancer survivor and a patient advocate, how do you define social needs and why is it important for patients to self-report these social needs?
Wenora Johnson: That is a great question. And then I actually look at it in four different ways. I think first and foremost about my psychological needs. And those needs are just basic for human survival, like food, water, clothing, housing, and then finally just overall health and quality of life. That second one is going to be my safety needs. Protection from violence and theft, emotional stability, and well-being. And then what we're all feeling a pinch of lately is financial security. And then my third one is love and belonging needs, having close bonds with our family, friends, physical and emotional intimacy, interacting with social groups, all of this provides us with the feelings of love and connection we need not only just to survive, but to thrive off of. And then finally, fulfillment of our full potential. This can be in just caring for others, improving things like our artistic abilities like cooking, music, athletics, and then experiencing new things in life, traveling, things like that, that just do a lot for our physical psyche. So, there's so much when it comes to social determinants that can affect us as patients. And self-reporting these needs are just essential and can be at the same time difficult for patients to do.
Dr. Leslie Hinyard: Now, speaking of difficult things that patients can do, Krista, in your work, what are the most commonly reported needs or social risks that you encounter reported by patients?
Krista Nelson: Well, I really loved what Wenora just said, and I think that really articulates exactly what I'm hearing day-to-day in the work as an oncology social worker. Right away, I think the biggest struggle or the reason we get notified of a patient having needs is around financial toxicity. So, we know that finances and medical bankruptcy is caused, number one, by a cancer diagnosis. But if you think about your socioeconomic status, it really impacts everything that we do. It's our ability to be able to get to treatment. It's an ability to get healthy food, it's an ability to be able to take time off of work and actually get to the treatment. It might mean, “Gosh, do I have someone who can watch my children? And can I pay for screening, can I pay for childcare to go to screening? Am I going to prioritize that? And most of all, do I have access to insurance and good health care?” So, I'm hearing a lot about that.
The other thing I think I hear a lot about is social isolation. And when Wenora spoke about it, about your community, what I heard her saying is her community and having that sense of love. And when I think about social isolation, sometimes a trigger for me is when someone is coming in for a giant cancer surgery and needs a ride to the treatment. Now, you may think, what does that tell me as a social worker? But what that tells me is that this person may not have a giant community of people around them to help them if they have no one who can bring them in for this big surgery. A lot of times when I'm working with physicians and we're meeting with patients, there is so much isolation out there that I remind doctors, this might have been the only time that this patient was physically touched in the last year when you do your exam.
Other things that come up are housing insecurity. We're seeing a lot of that in the community where I live. And then also just access to healthcare and the ability to navigate it. A referral of a patient that I was seeing because the physician noticed that they had a lot of weight loss, and they were in breast cancer survivorship and there was some question of maybe dementia or access to food. And so, of course, I was eager to check in with this patient who lives in kind of a rural part of our state. And she was 80 years old. And when I went to talk with her, I was kind of wondering about depression. Is she not motivated to eat? What's happening here? And as I talked with her and I asked her about her appetite and I asked about finances, she shared with me that it was her teeth and that her teeth were broken, and she was having a hard time chewing. And I asked her specifically, was she interested in dental care? And she said, “No, not really at this place in my life.” But I was able to find some supplements through messaging our dietitian. But what also came out is that she said, “Well, I don't have a computer or a smartphone to be able to order this.”
So even though here we are in 2023, I do think there is a large population of people who don't have access to the resources that we think as practitioners or providers that maybe are more accessible. So, it's really important to meet with each patient where they're at and figure out the best plan for them.
Dr. Leslie Hinyard: Thank you, Krista. This next question is actually for both of you. In addressing these needs from a patient, who should they be having these conversations with? Now, should patients rely on their healthcare team or their providers to address their social needs? And do you believe patients are comfortable having conversations about social needs with their providers? And I'm going to go ahead and ask Wenora to speak first and then Krista, I'd love to hear your response as well.
Wenora Johnson: This is really such a great conversation because what I’m getting out of this is really that communication and teamwork are essential for providing just plain old good quality healthcare. And it can be difficult for patients to have these conversations with their healthcare team without feeling stigmatized or made to feel less than because they can’t adequately take care of themselves. I think of the example of my brother who suffered from mental health issues and he also had a late stage cancer, but a lot of times just felt powerless and unable to speak up because of his mental health diagnosis. His fear of being treated differently was real, and at times, this experience caused him to just shut down when it came to his own care.
And so as a big sister, this is where I had the opportunity to step in and be that virtual, more or less, caregiver for him and speaking up and being that voice for him. If nothing else, this is where it takes a village, an entire team to recognize maybe what symptoms or to help the patient when the patient can’t speak up. It means taking a little bit more notice of how your patients look, as Krista mentioned. Do they look well-fed and clothed? How are they getting to their appointments? Do they even have any close family or friends that they can talk to during their appointments? This is just all so important just for our general survivorship.
And looking forward to this continued discussion. So, bring it on, Krista.
Krista Nelson: Yeah, I appreciate what you said, Wenora. And often there is this body of literature out there that talks about patients having a loved one at the bedside being a vital sign. I think patients have a difficult time bringing this up. I can imagine, I, myself would wonder about what I say and if it's going to impact the treatment that I'm offered. So, for instance, if you're having trouble financially, you may not want to talk about your inability to pay, thinking that you may not get the same treatment offered. So, I think when we talk about these social needs, the most important thing is that everyone is talking about it all the time, more than once. And when you ask should patients bring this up? Absolutely. But I also think there is a power differential. And just to acknowledge that patients, I want them to feel empowered; people with cancer and they may just be so overwhelmed with everything else that's happening.
When the doctor is saying you have cancer, their instant thought may be, "Oh my goodness, how am I going to pay my rent or how am I going to tell my child?" And so, using the rest of the team; being an oncology social worker, we do a ton of screening when patients are first diagnosed, "What are some things or anything you’re concerned about?" Well, we know people's anxiety just coming in is going to be high, they're coming to see an oncologist for the first time. But I think everyone on the team, it's our responsibility to be checking in and normalizing the experience that everybody needs help and that we have a whole team of specialists, people who are focused on emotional health, physical health, and really paying attention to any barriers that might get in the way of that patient being successful for the treatment that they want.
Dr. Leslie Hinyard: Thank you both for such really great responses. Now, moving on to being proactive in one's health decisions and care, do you think we will get to universal screening for patient social needs and Social Determinants of Health in the cancer care delivery system?
Krista Nelson: I'll take that one first. Wenora, if that's okay. I do think within the healthcare system we are doing a better job of getting some patient-reported outcomes. So, we are doing a really good job of distress screening that's taking a pulse in the moment of where someone's rating their psychosocial distress on a scale of 0 to 10. And with that, there's often a needs list. The problem is really to screen all of these patients and to address all of their needs takes an army. It's a lot of time and it is important, but there isn't a lot of reimbursement for this type of support within healthcare. And I think that's something that's going to change.
But I also know that addressing Social Determinants of Health has an impact on health outcomes of over 50%. It's well-documented. And so when you think about some of the treatments that we offer for cancer diseases, they may offer a 10%, a 30% difference in health outcomes and quality of life. And if we know that paying attention to these improves outcomes by 50%, gosh, that's something that we really need to switch focus to. And I think it may take some accrediting bodies to change the requirements of what we do as oncology professionals, as well as some reimbursement changes.
Dr. Leslie Hinyard: Wenora, do you have anything to add?
Wenora Johnson: I truly, really agree with what Krista was saying. And then when it comes to the part about it taking an army, I think this is where we are getting better because there are patient advocacy groups that are out there in the wings waiting to help so that the burdens and the load is a little bit lighter for everyone. So that patients who are experiencing these social determinants that are affecting their health can get the needed help. And so, this is where I'm asking for the continued collaboration between all groups in all of the space, all the way down to research. That's where I'm lending my voice to help in this area.
Krista Nelson: Wenora, thanks so much because we can't do it without the patient voice and I'm just so grateful that you and other advocacy groups are out there and we really have seen a shift of hearing the patient voice in everything that we're doing, and it's so important. When we think about cancer screening or reducing cancer by 50%, sometimes as a social worker, I feel a big weight of that thinking, gosh, a lot of our patients don't have a home or a way to get to screening. So, I think we do have to pay attention to addressing the most vulnerable patients until we can really make a mark to reduce cancer.
Dr. Leslie Hinyard: This conversation has been wonderful and the way that it really leads to this next idea of connecting these dots as far as what are some tips for patients and providers to help start these conversations. We know sometimes they can be challenging. So, do you have strategies or tools for how people can get started making sure that they feel empowered when they're in the room with their provider?
Wenora Johnson: Absolutely. If I can jump in, I have this immediate list of things that came to mind. And the first is basically healthcare providers when they are talking to their patients, speak at a slower pace so that the patients can take in and grasp what's being said to them so that they can respond back openly and how they feel. And how about just showing respect, understanding the patient's cultural needs and how they feel about their own care, and monitoring the body language? Sometimes when a patient, I've done this a million times, gone into my doctor's office and the first thing they say is, “Wenora, how are you doing today?” And I'm like, "Okay." And knowing that "okay" should be addressing that maybe I'm feeling heart palpitations or something like that. So maybe reading a little bit into my body language, having good and clear written instructions for your patients, avoiding jargon or complex medical terms, and using just language that patients can understand so that they feel comfortable in sharing maybe what's going on in their life and impacting their ability to get the care that they need. So those are some of my tips that are more geared toward the healthcare provider.
Dr. Leslie Hinyard: Thank you so much for sharing those. Krista, do you have any tools of the trade?
Krista Nelson: Yes, I think Wenora hit it on the head, it's really just pausing and connecting with the patient for a few moments before we go in with our agenda and really coming from a trauma-informed place of sitting at the same eye level as the patient, pausing and just checking in with them and maybe asking a question like, "What's important to you? Is there anything I should know about you before I recommend treatment for you? What's important to you?" I think really letting patients know they're not alone in this journey and that there is this whole team of people available to help. I don't think it has to be necessarily– Sometimes I think our patients feel most connected to the MA who rooms them or the scheduler that calls in. I get some of my best referrals from other members of the healthcare team. So, I think just checking in, those people have relationships over time and I think oncologists and providers, we have relationships with these patients over time. So, I really think getting to know what's important to them and embracing that and asking about that at each visit helps patients feel more connected, and that we do care and understand. There is this whole community of people hopefully around them that surrounds them and is impacted by this diagnosis; it's not just the person in the room.
Dr. Leslie Hinyard: Those are wonderful tools. Do either of you have any final thoughts you'd like to leave our listeners with?
Wenora Johnson: Absolutely. I'd love to share some of the things that keep me motivated. And some of that has always been my love of quotes. The one that I have that's my favorite, of course, is by Maya Angelou, which says, "People will forget what you said, people will forget what you did, but people will never forget how you made them feel." And so, it's often not what you say but how you say it that impacts people. It's often not what you do, but how you do it that influences people. And I know that personally, I'll never forget how my healthcare team continues to this very day to make me feel about my treatment for cancer. And as I undergo regular surveillance due to my Lynch Syndrome status, knowing they have my back and that I can communicate with them on any level makes it easier for me to get the assistance that I need, and then, in turn, as a patient advocate, make that need known throughout my community.
Dr. Leslie Hinyard: Thank you so much for sharing. Krista, did you have anything you'd like to leave our listeners with?
Krista Nelson: Yeah, I think for the healthcare teams out there, just really remembering that our most vulnerable patients and people with a lower socioeconomic position have worse health outcomes and higher mortality rates from cancer than anyone else. So, we really need to be paying attention to these nonclinical factors. I think they are clinical factors that impact health outcomes, and this will lessen the burden of cancer for everyone, including most importantly, that patient.
Dr. Leslie Hinyard: Thank you so much. I love your idea of reframing as clinical factors these Social Determinants of Health. I'm hoping that is where we end up. But today I wanted to thank both of you for joining us on this episode of ASCO's Social Determinants of Health and Cancer Care Podcast. Really appreciate you being here.
And I want to say thank you to our audience for listening. It's been a pleasure sharing this information with you all.
For more on the conversation of data gathering, please join us for the next episode where we talk to a panel of cancer care providers about the assessment of patient social needs. To keep up with the latest from Social Determinants of Health and Cancer Care Podcast, please click Subscribe so you never miss an episode. And let us know what you think about this series by leaving a review. Visit asco.org/equity for the latest resources, research, and more on equity, diversity, and inclusion in oncology.
RESOURCES
ASCO Daily News Article: Integrating Social Care Into Cancer Care Delivery: Are We Ready?The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
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This episode sets the stage for the second season of the Social Determinants of Health (SDOH) in Cancer Care series. As the first African American president of ASCO, Dr. Pierce continues to build her legacy on her presidential theme, “Equity. Every Patient. Every Day. Everywhere.” We will discuss the landscape of SDOH in cancer care. Dr. Pierce will share what sparked her interest in SDOH and why she considers a focus on patient social needs a critical aspect of cancer care. In addition, to highlighting ASCO’s efforts and continued charge to make progress to address cancer health inequities.
TRANSCRIPT
The guest on this podcast episode has no disclosures to declare.
Dr. Reggie Tucker-Seeley: Hello and welcome to the second season of the ASCO Social Determinants of Health series. I am Dr. Reggie Tucker-Seeley, Vice President of Health Equity at ZERO - The End of Prostate Cancer, and Chair Elect at ASCO's Health Equity and Outcomes Committee. With me today is Dr. Lori Pierce, Professor with tenure in Radiation Oncology, and Vice Provost for Academic and Faculty Affairs at the University of Michigan, and Director of the Michigan Radiation Oncology Quality Consortium. Dr. Pierce served as President of ASCO in 2020 through 2021, and is the current Chair of the Board of the Association for Clinical Oncology.
Welcome, Dr. Pierce. Thank you for joining us today.
Dr. Lori Pierce: I am absolutely delighted to join you today. So thank you for having me. And I am particularly thrilled to be talking about social determinants of health and to be the first of the 2.0 episodes of Social Determinants of Health. As you know, we had an initial series, and it really focused on some of the basics of the social determinants of health and really understanding the impact of these determinants on cancer care. And when we did the first Social Determinants of Health series, we really focused on trainees and early career oncologists because, of course, these are going to be our future leaders. So we had an advisory group made up of trainees and early oncologists, and they suggested various topics, and those topics then led to the series. So it is a thrill for me to be on the first episode of Social Determinants of Health 2.0.
Dr. Reggie Tucker-Seeley: Great. And I participated in that first round. So those first episodes were really meant to lay the foundation to introduce social determinants of health to the oncology community. And in this next set of episodes, what we're attempting to do is to answer the question of how to address social determinants in the cancer care delivery system to advance cancer health equity. While we've been talking about social determinants of health and public health, which is where I was trained for quite some time now, these discussions are relatively new in healthcare delivery and cancer care delivery and research. So in this next set of episodes, what we're hoping to do is to answer the question that I often get asked, that we all often get asked in the social determinants of health space by cancer care providers, by cancer care researchers and community organizations, is: What can we do? How do we actually address social determinants in the cancer care delivery system?
So in this episode, we will discuss where the current conversation is in cancer care delivery related to the social determinants of health and hopefully help to move from talking about this issue to action within the cancer care delivery system. And Dr. Pierce will share her thoughts on how far we have come and how far we have to go when it comes to addressing the social determinants of health and cancer health inequities.
So there's been an increase in the discussion about social determinants of health and patient social needs. However, I've realized in my own work related to health disparities and social determinants of health that not everyone comes to the table knowing what these terms mean. And one of our first podcast episodes was about defining terms. And our Social Determinants of Health Task Force introduced our definitions for these terms in our ASCO Daily News post that I co-authored with Dr. Surendranath Shastri of MD. Anderson. But Dr. Pierce, can you tell our listeners why these initial first steps of aligning on definitions is so important and how you define these terms for your practice and for your research?
Dr. Lori Pierce: So I prefer to use a comprehensive community-based definition of social determinants of health. I know, as you said, there are different ways that we can define it, but I have generally used the World Health Organization's definition. It's a very comprehensive definition. Social determinants of health are really those non-medical factors that influence health outcomes. And they talk about these conditions in which people are born, grow, work, live, and age, so along the full continuum. And they talk about the wider set of forces and systems that really shape the conditions of our life from beginning to end. And quite honestly, these forces end up being related to power and money. You see that these forces include economic policies that will disadvantage one group compared to another and systems that have been in place for a long, long time, again that disadvantage one group relative to another. There are development agendas, there are social norms, social policies, and they are just political systems that are ingrained in our lives. And they then allow these social determinants of health which then influence health inequities. And the unfair and avoidable difference is that you see, no matter what country you're in, that health and illness follow a social gradient, with those who have the lower socioeconomic position in all cases doing worse. And obviously, we are in cancer, and we see that's reflected with respect to increased mortality rates for those who are in a lower socioeconomic status.
So that's the good news with using the social determinants of health definition as defined by the World Health Organization. But the downside is it's broad. And so, in order for it to be really useful, we have to decide how we are going to define it within our own practices, and then we have to define metrics. As you said, we can talk about social determinants of health forever, but the point is, what are we going to do? What changes are we going to make? And so you have to translate that into metrics where you can assess that there is change, change with regard to screening, change with regard to intervention. And we also have to take into account the intersectionality of so many of these factors. And we think about factors such as obesity, violence, poverty, stress, and communities. So many of these factors that are connected. And a good example is, let's say you have a patient where we have advocated weight loss to improve the patient's outcome both for their overall health and also to decrease the risk of certain cancers. And so you have this program, and you advise this person to exercise, and they're being very diligent, but you're not really seeing a change in outcome. Well, it's probably because they live in an environment where crime is such an issue, where they can't go outside and actively exercise. So again, we have to be aware of the intersectionality of so many of these factors that will hold us back from really moving the needle for social determinants of health.
Dr. Reggie Tucker-Seeley: That's such a great example. We come to the table not just, or we come to the healthcare delivery system, not just with that single issue that sort of brought us to care. We bring our whole selves to the care encounter. So it's important that those are recognized as we navigate that system. I think it's so important to have our leaders recognize the importance of social determinants of health. And during your tenure as ASCO President, you championed cancer health equity and elevated the focus on social determinants of health. So where do you hope to see ASCO go in addressing social determinants of health and health inequities? That is, how can we build on what you started during your term as ASCO president?
Dr. Lori Pierce: Well, first of all, I want to say that I strongly feel that we've come such a long way. So much of the groundwork was already in place at ASCO before my presidency. I mean, everything ASCO has done since ASCO existed has been to focus on the improvement of the care of patients. And a part of that, of course, is being able to weed out those inequities and make it an equitable system. So when I then became President, the stars were aligned. And ASCO, with the work they were doing, they had the infrastructure in place, and they could not have been more encouraging, more supportive of the work that we wanted to do. So one of the programs, as I mentioned earlier, the Social Determinants of Health, the initial set of podcasts, as you mentioned, really looked at some of the basics of social determinants of health. And we had things such as taking a Social Determinants of Health History, which you were a key part of that podcast. And it really focused on we as physicians have been taught to take a history, but if we don't ask the right questions, we won't be able to elicit the barriers that patients are facing, which are largely the social determinants of health. And we focused on the cost of cancer care. We focused on modifiable risk factors such as tobacco cessation. We talked about access. We talked about a lot of the basic tenets of social determinants of health.
During my presidency, we also focused on an initiative where we want to increase the accrual of minorities onto clinical trials so that everyone has equal access to trials. And we know this has been something that has been worked on by so many amazing researchers such as yourself through the years. And so we harnessed a lot of the ideas from many of our colleagues to really promote and put together an outline and a guide that institutions can use to improve their enrollment of minorities on trials. And we also worked on a program to help to bring in more minority medical students into Oncology to make them aware of all the amazing programs and careers that they can have in Oncology.
And then, Dr. Everett Vokes was president from 2021 to 2022, and his focus was advancing equitable cancer care through innovation. And he really extended my theme for equity of care and really focused on bringing down barriers across scientific disciplines, using innovation at the intersection of medicine, technology, and scientific discovery. And that was an important initiative worldwide. And then, Dr. Eric Winer, who’s our current president, his theme is ‘Partnering with Patients: The Cornerstone of Cancer Care and Research’. Of course, we do so much, but we have to take the lead from our patients. We have to listen to them. We must understand their barriers, and we must partner with them. And that will be his focus for this year. So there is a lot that ASCO has done and will continue to do to really hone in on how we can eliminate social determinants of health.
Dr. Reggie Tucker-Seeley: Well, it's so great to see this sustained discussion around health disparities generally and social determinants of health specifically. And although we've come a long way in talking about social determinants of health and healthcare delivery, there remain many, many barriers to implementing efforts to actually address the social determinants of health in the cancer care delivery system. So in your own practice and research, what have you heard during your tenure as ASCO President? And can you tell our listeners about some of the facilitators and barriers to addressing the social determinants of health and patients' social needs in the cancer care delivery system? And if you have any best practices around how we can remove or limit those barriers, I'm sure our listeners would be eager to hear those as well.
Dr. Lori Pierce: So I firmly believe that advocacy is key. Everyone can advocate at a local level, at a regional level, at a national level, or even at an international level. We work with patients every day, we hear their stories, and we can advocate for patients. In many cases, they're not able to advocate for themselves. One key example of how advocacy is so important was the Clinical Treatment Act, which was passed. And that was a policy where prior to this law being passed, unlike patients who had Medicare coverage, unlike those who had private insurance, those who had Medicaid did not have their routine care costs covered for if they were participating in a clinical trial. So things like seeing your doctor, getting routine blood studies, getting routine X- rays, getting anti-medics, those kinds of things that are needed when you're on a clinical trial, Medicaid patients did not have that covered. But if they were not on a clinical trial, it was paid for.
So then, going on a clinical trial was a disincentive for patients who had Medicaid coverage. And this was a group of patients that we absolutely want to be able to offer a clinical trial to, as we do with everyone else. And so when that was changed, when that law was passed, we now have the resources for Medicaid patients to be able to have those routine care costs covered. And how did it get passed? It was passed because of advocacy. Everyone can advocate. So awareness, acknowledgement, appreciation, understanding of what our patients are going through. Be aware. And we all need to improve our listening skills, again taking Social Determinants of Health History and listening to what our patients are saying.
In the Perception of Health Equity survey that ASCO conducted during my year as President, we learned that most providers were aware of health disparities but didn't feel prepared to address them. And we also learned that respondents wanted resources to empower them to address disparities, such as scripts for communicating with patients and additional training. So we learned a lot through that survey to help us as ASCO to make materials available to our patients. And we started to deliver on resources through the ASCO-ACCC research statement on diversifying clinical trials. That was the initiative that I mentioned. We partnered with ACCC, the Association of Community Cancer Centers, to ensure that there is a document that institutions can follow to assess where their barriers are for allowing patients to go in trials. And I'll say that's a very detailed assessment because every practice is different. The barrier in one practice may not be the barrier in another practice, but we want to be able to self-assess where the barriers are so that we can eliminate them. And a perfect example is, let's say you are a practice where you have 100 African-American patients who walk in your door in one month, but only three of them go in a clinical trial. Well, this assessment says: What happened to the other 97? Where were the steps that we lost these patients? And so it's very important to do a self-assessment.
And we also focused on the ‘Just ASK’ training program, which really focused on implicit bias. We all have biases. We have to know our biases, and we have to eliminate those biases. And this is a very powerful tool to really self-reflect on our own biases. So these tools are now available on the ASCO website. And I would encourage everyone to take advantage of them, utilize them fully.
Dr. Tucker-Seeley: Well, thank you so much, Dr. Pierce, for illuminating those examples. I think one point that you made regarding the Perception of Health Equity Survey was this notion of why screen if you can't navigate and connect the patient to a resource. And then the importance of understanding the individual context around the particular practice in order to implement social needs screening and addressing patient social needs.
But in doing that and in addressing patient social needs, oftentimes, the physician is viewed as the captain of the healthcare delivery team. But for social determinants of health and addressing patient social needs, we might need a different captain to lead this approach. So how might we prepare teams or systems for identifying the best leader of this effort? How can physicians be champions of cancer care equity, and then what is one resource or action that a listener can do today?
Dr. Lori Pierce: So, with regard to having cancer teams and captains, I think we need to have co-captains. We need to have an inclusive team of physicians, nurses, nurse practitioners, PAs, pharmacists, clinical pharmacists, social workers, et cetera, because each of us brings an expertise to the group. And there may be ease and also availability for the patient to interact with members of the team who may not always be the physician. So, I think in order to optimize communication, we need to have multiple captains. We need to be co-captains. We all need to work together. People excel in different ways.
We need to make sure the infrastructure is in place to do what we need to do to have these teams and to be successful. And so, we have to make sure that we've got the resources, we have the infrastructure. So, we have to engage leadership in these conversations so that we know we have the support we need. We can't do this without leadership support. And everyone, I think, really needs to be held accountable. Everyone can be an advocate for their patients. As I mentioned before, we can be involved at the state level, local level, or even the national level.
And ASCO has programs to help connect our members and to help bring them in so they can be engaged in an advocacy effort. There's a day that ASCO and ASCO members go to the Capitol Hill to advocate, and I can tell you, having done that multiple times, it is a very powerful experience because, again, we bring the stories – we're not making this up. We bring the stories of the patients that we see. And our lawmakers don't have that perspective, and we give them that perspective, and then they really get it in terms of how important the things are that we're advocating for. Meetings are held with the representatives on the Hill, and I would encourage our ASCO members to be active in that program.
And then again, the ASCO-ACCC Site Self-assessment Tool for Clinical Trial Participation. All patients who want to participate in clinical trials should have the opportunity to do so. And I would highly encourage our members to take that self-assessment tool and see where our institutions, where our practices, where the barriers are, and also to take the Implicit Bias Training. And you can visit asco.org/equity to access both of those tools.
I can't emphasize enough that no act is too small. There is something that everyone can do to move the needle and to decrease the inequities, and make this a more equitable system. Advocate for your patients. Listen to your patients. They are always our North Star. They're always the ones to guide us.
Dr. Reggie Tucker-Seeley: Dr. Pierce, thank you so much for those closing comments. I do want to highlight those last couple of points that you raised, that is, the importance of having the infrastructure in place within your system because that ensures sustainability of being able to address these social needs so that the program isn't just a pilot program. The importance of advocacy – I served as a Health Policy Fellow for a year, so I was on the receiving end of those stories, and those stories are indeed important to policymakers. And they definitely inform how those policies get developed and implemented. And then lastly, understanding your context for implementing patient social needs and understanding the infrastructure around that implementation.
So again, thank you so much, Dr. Pierce, for your leadership on health equity and social determinants of health here at ASCO. And thank you to our audience for joining us for this first episode of ASCO's Social Determinants of Health, our second season.
To keep up with the latest episodes, please click subscribe and let us know what you think about the series by leaving a review. Please visit asco.org/equity for the latest resources, research, and more on equity, diversity, and inclusion in Oncology. Thanks so much for joining us.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
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This episode was originally released September 29, 2021
In this Social Determinants of Health (SDOH) episode, Dr. Jacquelyne Gaddy (UNC-Chapel Hill) speaks with Dr. Marvella Ford (Medical University of South) and Dr. Jennifer Ligibel (Dana-Farber Cancer Institute) on obesity and energy balance as modifiable risk factors and how clinicians can respectfully engage with their patients on this topic. View COI.
TRANSCRIPT
LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 president of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care and is not intended for use in the diagnosis or treatments of individual conditions. Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement.
For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative and some even uncomfortable. But ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere.
I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learned new ways of thinking about these issues and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high quality equitable cancer care. Thank you.
JACQUELYNE GADDY: Welcome to the ASCO Social Determinants of Health Series. I am Dr. Jacquelyne Gaddy, and I'm a current third year fellow in the Division of Oncology at UNC Chapel Hill. With me today is Dr. Marvella Ford, endowed chair of cancer disparities from the Medical University of South Carolina and South Carolina State University, and I also have the pleasure of having Dr. Jennifer Ligibel, director of the Zakim Center for Integrative Therapies and Healthy Living at Dana-Farber Cancer Institute.
In this episode, we will be discussing obesity and energy balance as modifiable risk factors, and how clinicians can respectfully engage with their patients on these topics. Dr. Ligibel, we've had some time talking together. And I want to start by actually just getting an introduction of how we can actually relate cancer and the outcomes of cancer with this topic today of obesity.
JENNIFER LIGIBEL: Sure. This is definitely a topic that we've learned a lot about, especially within the last few decades. We recognize that obesity is an epidemic, not just in the United States, but everywhere. In the US, many adult populations across various states have a prevalence of 40% or more of the adult population having obesity. And this rate is rising around the world. And we've known for a long time that obesity increases the risk of a lot of diseases, heart disease, diabetes. The connection between obesity and cancer is something that we have recognized more recently.
And in fact, in 2016, the International Agency for Research in Cancer reviewed all of the data looking at the relationship between excess adiposity, whether it was measured through BMI, through body composition and the risk of developing cancer, and found that there were 13 different cancers for which there was a clear and consistent relationship between higher levels of obesity and higher levels of cancer.
We also know that there's a relationship between a number of factors that contribute to excess adiposity, things like inactivity and poor dietary quality and excess cancer risk. We also know that individuals with obesity face increased challenges after cancer diagnosis. There are higher incidences of things like surgical complications, neuropathy, and other side effects of cancer therapies. And for many diseases, individuals with obesity at the time of cancer diagnosis have an increased risk of cancer recurrence and mortality as compared to leaner individuals.
So we know that there is a strong relationship between obesity and the risk of developing cancer and the risk of dying from cancer, as well as suffering increased toxicity from cancer treatment.
JACQUELYNE GADDY: Thank you for that, Dr. Ligibel. That gives us a really introduction into this important topic. And Dr. Ford, if we can dive a little bit deeper, I know this past summer for our ASCO conference, I had the pleasure of listening to you as you presented. And I wanted to specifically ask you to address what you discussed in regards to inflammation and its relation to cancer and obesity.
MARVELLA FORD: Yes, absolutely. So as Dr. Ligibel just noted, there is an association between being overweight and likelihood of being diagnosed with cancer, and also, the cancer treatment outcomes. What we have seen is that there's an underlying association between bile inflammation. The same bile inflammation that is linked to heart disease is also linked to cancer. And the good news is that there's something that we can do about it. So when we talk about the modifiable behavioral health risks, this is one of them.
What we're seeing is that physical activity can actually reduce levels of bile inflammation in the body, which is great news. And Dr. Ligibel and others around the country are leading the way in developing physical activity interventions for people who are diagnosed with cancer so that we can intervene early on to develop strategies to improve their cancer treatment outcomes.
You know, that leads us to the broader question of physical activity for the general population. How can we increase physical activity for everyone to reduce cancer risk? And I think there are some very attainable goals that we can set and there are some strategies that are achievable that we can accomplish in that arena.
JACQUELYNE GADDY: As we think about the social determinants of health and why we got started with this, and Dr. Pierce did an amazing job of putting that at the forefront of ASCO's goals this past year during her presidency, before we dive even deeper, Dr. Ford, I want you to address specifically, you had a wonderful figure. And I can kind of see it in my mind right now in regards to the race maps when addressing obesity, and again, tying that back into its relation to cancer.
MARVELLA FORD: So when we talk about obesity, what we don't want to do is get into a blaming-the-victim kind of approach where, oh, these people are just so overweight, that is exactly what we do not want to do. It's really important to look at the social determinants of health and the contributors to overweight and obesity. Because people are working with what they have available to them. And so the map that you're talking about really highlights the social determinants of health in relation to obesity.
And so what we saw-- I showed a series of maps-- is that obesity in the US, it's associated with race but it appears to be driven by socioeconomic position. So areas that have lower levels of income, education, you know, upward mobility is what we used to call it, have higher rates of obesity. And a lot of that is due to what's in those communities. And so if you drive around those communities, whether they're rural or urban, you see a lot of fast food places. You see a lot of food deserts.
Food deserts are not just a purview of inner cities, urban areas, rural areas where you would think, well, that's ironic because food is grown in the rural areas. But rural areas can also be food deserts. And so in my work at the Hollings Cancer Center, we're focusing a lot on the I-95 corridor of South Carolina, which ranges from North Carolina at the top, to Georgia at the lower end. And I know that's been an area of interest to many in our state.
And what we have seen is that it's one of the poorest and most medically underserved areas of our state. And if you just do a visual exam, if you drive on the I-95 corridor and just get off on some of the side roads, you see just a dearth of healthy foods, grocery stores. There are convenience stores. There are gas stations. I call it gas station food, convenience foods, where you can eat to fill up. But it's not really healthy food and it's not life-affirming, life-promoting, life-enhancing food.
And so this is what people have available to them. We have seen this with the impact of COVID-19 on the school systems. What we're seeing is that the schools, even if they're closed due to COVID, they still have to remain engaged in food distribution. Because for a lot of the children, the meals that they had at school may have been the only meals that they had that day. And so kudos to the school systems around the country for continuing to distribute healthy food to the children even when school is not physically in session, even when they're in a hybrid model or a virtual model. And on the weekends, they're sending kids home with backpacks full of healthy foods.
I just spoke with a principal on Friday. One student tested positive at a local high school, and so she had to inform the other students who were in contact with that student that they had to get sent home. And one young lady was crying and said, but I want to stay in school. And there are a lot of reasons, and one of them is food security, being able to eat healthy foods and having access to healthy foods. Healthy foods can help to reduce inflammation in the body.
But we also know that there are stressors that are associated with the social determinants of health that also raise levels of bile inflammation, stress, stressors. What are the stressors associated with the social determinants of health? The same stressors that we're experiencing in this pandemic. The pandemic is really highlighting the stressors that many people in the US have lived with on a daily basis for decades.
Job insecurity, food insecurity, housing insecurity, educational insecurity, not knowing whether if the rent increases by $30 in one month, it may not seem like a lot, but if your budget is already stretched really tight, you may not be able to make a $30 increase. And then, if you and your family are living in your car, how does that impact healthy eating, and how does that impact stress?
And so all of these factors combined, there's kind of an interactive multiplicative effect on increasing levels of stress and stressors that people are facing. And again, the good news is that physical activity can help to lower those levels of bile inflammation. And I think we just need to be cognizant of where people are when we develop interventions and start with where they are in what's available and accessible to them in order for the interventions to really be successful.
JACQUELYNE GADDY: Thank you for that, Dr. Ford. And I think you touched on a lot of different barriers that I know I can attest as a fellow and been in training for so long, and I know Dr. Ligibel can also likely attest to that as well. I'm from Buffalo, New York, a rather urban environment. And you know, my mom raised me as a single parent mother. So many of these barriers that you're describing I either experience personally or definitely have close friends, et cetera, that did have these barriers.
Dr. Ligibel, I want to ask you in your day-to-day practicing, outside of the barriers that Dr. Ford addressed, what do you tend to see on a day-to-day basis that are common barriers that patients face when they're battling obesity?
JENNIFER LIGIBEL: I think that's a great question. And I will say that one of the things that we've been doing through ASCO for the last few years through our work in the obesity initiative is trying to learn a bit more about what's happening in practice. What are patients hearing? What are doctors saying?
And so in 2019, we conducted a survey that went out to all of ASCO membership asking anyone who actively participates in clinic, whether they were a physician, a nurse practitioner, a chemotherapy nurse, kind of all through the entire health team, do you talk to your patients about physical activity, about nutrition, about their body weight and how that may be connected to cancer?
Now this was a survey, so the people that responded were very interested in this topic. And most of them indicated that they did talk about these topics with their patients. But they noted that they felt like they didn't have a lot of training in what's the best way to bring up these topics. And we asked them specifically, what do you think are barriers to patients making healthy lifestyle changes after cancer diagnosis?
And one of the things that they said, certainly, barriers in terms of transportation and resources. There's just-- many places don't have physical activity programs to send their patients to. But they also talked about that patients weren't aware that this was an important part of their health, and that this really needed to be a message that was echoed many times, not just by one provider.
So we followed up that survey to providers and asked patients, what are you hearing about nutrition and exercise from your cancer care providers? And not surprisingly, because this was patients that were also interested in this, they all said they wanted to hear about this. And only about half of them actually got any kind of information about a healthy diet or exercise or weight management from their providers.
And so I think that there's clearly work that we still need to be doing, trying to figure out, how do you help providers talk about these things with their patients? How do you help patients make these types of healthy lifestyle choices after cancer diagnosis? Because there are a lot more barriers than for someone who's thinking about making changes in their activity before cancer diagnosis related to their cancer. They may be more tired. They may have side effects like neuropathy or lymphedema.
In addition to all the things that Dr. Ford talked about, cancer creates a lot of economic uncertainty for people. And that can contribute to not thinking that you've got the resources to be able to make these healthy lifestyle changes. So I think there's a lot of work to be done both in the messaging and then having the services available to people to make it easier for people to choose healthier foods, to have the ability to exercise in a safe place. We have a long way to go to really make these things be accessible to our patients.
JACQUELYNE GADDY: Thank you, Dr. Ligibel. Dr. Ford, you have talked about this during this conversation. And you have previously mentioned this as far as your research is concerned. As we consider the solution, because that's the biggest part, right? We can talk about the problem all day, and I think we tend to do that a lot in research. But what is more important and most important in my eyes are what are we going to do about it? As we think about all of the things that Dr. Ligibel just mentioned, what are the parts from a structural racism standpoint that are lacking, that you think A, is a problem-- so we need to identify it-- and then also, as we transition into the last part of this conversation is, what are we going to do about it?
MARVELLA FORD: That's a really great question, because that's really the ultimate question, right? What are we going to do about it? And so I think that you and Dr. Ligibel have alluded to the fact that we want to make sure that the interventions are successful, these physical activity interventions. And so that means starting with where the patients are.
If we are working with a patient population that already was struggling financially before a cancer diagnosis, we have to recognize the impact of that on their lives of the cancer diagnosis, on their economic stability after. And even people who had really great jobs before a cancer diagnosis, depending on where they worked, they may or may not have the benefits that would continue to sustain them over time, over the course of the cancer treatment. So their lives may take a drastic shift as well.
And so I think that what we want to do is recognize what the patients are going through on a daily basis. And it would be wonderful to be able to offer at our cancer centers, people come for treatment. Can we do physical activity at the cancer centers? I know some are starting to do different types of exercise. But this would be something that they could bring their children to, they could bring their families so they wouldn't have to worry about child care. I know our cancer center at one point offered Middle Eastern dancing, or belly dancing. And it was just great. People could bring their kids. I participated. Even before my own breast cancer diagnosis, I participated.
And it really helped the women to regain mobility and use of their arms, being able to raise their arms over their heads after a breast cancer treatment. And so it really-- I think the exercise could be tailored to the needs of cancer patients as they recover. And as they continue to go through treatment and recover, you can tailor the specific types of exercise to their needs.
Most of our cancer centers have some type of wellness facility. And so I know that at our wellness center, we have a physician, Dr. Jennifer Harper, who started a physical activity program for breast cancer survivors. And it's gone on for, I think, at least five years. And so it's really great if we can build on the resources that we have in our centers, and our cancer centers, out in the community. If we partner with local schools, have gyms. A lot of them open up after hours to the community members so they can bring their children and everyone can exercise together.
But we could bring in people with training with cancer survivors to work on physical activities that are specific to certain types of cancer to help improve outcomes for those cancer types just by partnering with local schools. So I think there are a lot of things that we could do, making use of existing resources in our communities, doing a lot of partnerships, partnering with fire departments, partnering with people in the community who can become champions and can help drive it.
JACQUELYNE GADDY: Thank you for that, Dr. Ford. And lastly, Dr. Ligibel, we talk about-- in the Black community, a common thing that we mention is the Brown tax. But then when we consider the intersectionality of the Brown tax with those that are obese and that stigma that's associated with it. Lastly, what do we do to try to address that stigma? Because I think patients come in, they're already fearful about their diagnosis. And then some are fearful because the color of their skin. And now they're obese as well. How do we tackle that as providers and trainees?
JENNIFER LIGIBEL: That is a phenomenal question. And there are many data that show that people with obesity are less likely to seek medical care. They're diagnosed with cancers at a later stage. And a lot of that is due to that feeling of, I don't really want to engage with the system. I don't feel good when people are talking to me about my weight. And I think this is a place where we really need some concentrated training.
There are many subspecialties where this is already being worked upon. And I think that this is, again, something that as an oncology community, we need to think about how to treat our patients with respect and create an environment where people feel comfortable. Because therapeutic partnership with your cancer provider is so important, that people have that sense of being cared for. And I think this is really something that we can work on together.
JACQUELYNE GADDY: Dr. Ligibel and Dr. Ford, it's been a pleasure working with you before this and during this. I want to thank you both for taking time to speak with me today. And I want to thank you for joining us for this episode of the ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click Subscribe. Let us know what you think about this series by leaving a review or by simply emailing us at [email protected]. Thank you.
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SPEAKER: Thank you for listening to this week's episode of the ASCO e-learning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.
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This episode was originally released October 28, 2021
In this Social Determinants of Health (SDOH) episode, Dr. Deepak Vadehra (Roswell Park) moderates a discussion with Dr. Carmen Guerra (Abramson) and Dr. Daniel Carrizosa (Levine) on how access to care impacts SDOH and the available interventions and resources that can mitigate these issues for patients. View COI & Cancer.Net Podcast.
TRANSCRIPT
LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 President of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care.
The purpose of this video is to educate and inform. It is not a substitute for medical care and is not intended for use in the diagnosis or treatments of individual conditions. Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement.
For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative and some even uncomfortable, but ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere.
I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high-quality, equitable cancer care. Thank you.
DEEPAK VADEHRA: Welcome to the 10th episode of the ASCO Social Determinants of Health Series. I am Dr. Deepak Vadhera, and I'm a GI medical oncologist at the Roswell Park Comprehensive Cancer Center. I am joined today by Dr. Carmen Guerra, who is Associate Director of Diversity and Outreach at the Abramson Cancer Center at the University of Pennsylvania, and by Dr. Daniel Carrizosa, Medical Director of the Disparities and Diversity Program at Levine Cancer Institute in Charlotte, North Carolina.
In this episode, we will be discussing access to care and how it impacts the social determinants of health and the available interventions and resources that clinicians can utilize to mitigate these access issues for their patients. So thank you very much to both Dr. Guerra and Dr. Carrizosa for being here.
When I, sort of, think about access to care, I intimately equate it with equity. I think that, at its core, access to care is an equity issue and that not every solution is appropriate for every patient. But I think that the important thing is that, as we move forward in our discussion and sort of as we think about things globally, that we all recognize the importance of allowing appropriate access to care and making sure it is equitable for all our patients.
So with that in mind, Dr. Guerra, one of the things that I think about in access to care are barriers, and one of the biggest areas, I think, is that we need to improve, with terms of access to care, is the access to clinical trials and the coverage of clinical trials. So I know that's something you're passionate about and so would love to hear some of your thoughts on that and other barriers you see, in terms of access to care.
CARMEN GUERRA: Thank you, Deepak. First of all, it's a pleasure to be here. Thank you for the invitation. And yes, I'm very passionate about the equitable access to cancer treatment trials, and it's a space that I've been working on.
We know there are inequities in accessing trials, because we know that the proportion of Black individuals that participate in trials is very small. In the 28 new oncology drugs approved by the FDA between 2018 and '19, If you look at all the participants, only 4% were Black.
And we saw this, as well, in our own Abramson Cancer Center. In 2014, we just presented data at the ASCO National meeting, where we saw that even though in our catchment area, the proportion of Black patients with cancer was about 16.5% in our catchment area, the patients who were coming to the Abramson Cancer Center who were Black was only 11.1%. So I call that a community-to-clinic gap.
And then we looked at who was participating on trials, and that was about 12.2% of the population was Black. And so we began, in that year, 2014, on a whole series of strategies to understand, better understand and address the barriers. And one of the barriers that we focused on was transportation. Nationally, we know that Black individuals are less likely to have a car, own a vehicle. About 20% of Black households do not have access to a vehicle. So one of the things we developed was a transportation program.
We also worked on building partnerships with faith-based groups that serve the Black communities, as well as nonfaith-based groups, to increase our ability to go out to the community and educate the community about cancer, cancer prevention, and clinical trials.
And then in addition, we also did some internal things. We worked with our PIs to show them-- our investigators-- to show them where the burden of cancer in the Black communities was. What were the cancers, and what were the trials we needed to design for them? And then we also asked them to include a minority participation paragraph in all protocols they submitted.
And so in 2018, we were able to reassess the data. And what we found was a two-fold increase in the individuals who are coming to the Abramson Cancer Center because now, they had access through transportation and information. And then we also saw a two-fold increase in the individuals who participate in on clinical trials.
And for us, that really showed us that we could do this, that we could provide the equitable access to cancer clinical trials. And so that just has continued to embolden us to continue to work on this, because I think you do have to sustain your efforts. Otherwise, we might see the same statistics that we saw back in 2014.
DEEPAK VADEHRA: No, I couldn't agree with you more. And those are great interventions and great ideas that the Abramson Cancer Center was able to roll out.
Dr. Carrizosa, what do you see as some of the barriers to our patients being able to access the care that they deserve as cancer patients?
DANIEL CARRIZOSA: Yes, I think it's very interesting, because I think there's a lot of questions you can ask, in general, that help you think about these barriers to care. And Dr. Guerra was just talking about, almost, the what. You know, what do we do for patients so that we can get things done and help them?
So other things are, simply, the question of who is it that you're looking at? What different type of person it is-- is this a elderly person that we need to think of different options, like different trials, different therapies? Do we also have to look at how they can access information? Is telemedicine something that's very easy for them? Or are they not able to use a smartphone?
You also have to think about people with differences, such as transgender patients, who sometimes have significant, unique interactions with the medical community and unique needs, and we need to think about them.
Also, at our annual Think Academy, which is a large conference we do that looks at inequities, we had Susan Magasi, from the University of Illinois Chicago, come and speak. And she really opened my eyes, because she talked about disabled people. And I had never thought about how a disabled person gets a mammogram. So that's a who and a how.
On top of that, we also think about where. So we've talked a little bit about the transportation issue, and we have transportation issues in cities, rural, how they get telemedicine or broadband, where they might actually have a medical center close to them. They could be in parts of the country where people have to drive hours to be able to get good cancer care.
And then the why. What is it that we're trying to do for them? And importantly, how can we educate people about cancer and about what these barriers are and how we can try it overcome them.
DEEPAK VADEHRA: I think those are all very important points that you make, and things that we are all very important to think about as we move forward in both designing trials and working on improving our access for our patients.
I think one of the things that providers and practitioners, who may not be in urban centers or are community providers and not, quote, unquote, academic providers, like we are-- what resources, what practical things can they do to help, sort of, break down the barriers and break down the walls that prevent patients from getting the proper access to appropriate clinical trials and supportive care, such as that?
So Dr. Guerra, have you-- what are some practical tools out there that providers can use to help lessen the burden of access to care issues?
CARMEN GUERRA: It's an important question, and thank you, so much. One of my volunteer hats is that I am the Board Scientific Officer for the American Cancer Society. And they have programs precisely to help individuals with access issues, such as transportation, such as lodging.
One of their programs is the American Cancer Society Road to Recovery Program. And this is a program that provides transportation to patients with cancer to their appointments. It was a program initially launched back in the 1960s, but it was adopted nationwide by the American Cancer Society in 1983. And it's available to anyone with a diagnosis of cancer.
They have provided, in the past, before the pandemic, in a year, about 35,000 patients were served with almost half a million rides, and it's available, again, for free, if you go on their website, cancer.org. And there's a phone number, which I'll be happy to share with your listeners. It's 800-227-2345. And that's a general American Cancer Society number for any services that they provide.
The second resource from the American Cancer Society is the Hope Lodges. The Hope Lodges are a system of 30, maybe 31 now, lodges all across the United States and Puerto Rico that provides, again, free-of-charge accommodations to any patient with cancer.
Now, the eligibility requirements vary by location, especially during this time of COVID. But again, that same number or cancer.org a way to identify those resources for patients who need access to care or access to clinical trials.
DEEPAK VADEHRA: Great. That's very important. And I hope that everyone who's listening can recognize and be able to use those tools at their disposal.
Dr. Carrizosa, what do you think are some other ideas and resources? What has worked in your experience? And is there something, maybe out of the box we need to do? And sort of, let me-- tell our listeners, sort of, about your experience.
DANIEL CARRIZOSA: Sure, I think, bouncing off what we just talked about, organizations in the community, like ASCO, are incredibly important to use and to form trust with the community, as has been described in some of these podcasts before.
But more importantly, sometimes with these access issues, we actually need to think of new and different ways of trying to engage and bring people into cancer care or screening. And one of the things we do here at Levine Cancer Institute, is we created the first mobile lung cancer screening unit in the country.
And we saw a large number of patients with transportation issues in the rural communities that were a little bit wary of coming to, either, a brick and mortar screening area or a cancer center, and we wanted to overcome that. So we actually made this mobile unit. We actually come into the community. We do community assessments to build that trust.
And we do multiple screenings, other than just lung cancer screening. We also do head and neck screening. We're starting prostate screening through blood work. Controversial, but it was something we're looking at. And on top of that, we're also basing research studies in the community on our, what we call, Lung Bus Initiative.
And so thinking outside of the box and trying to find other ways in your community that you can look. Can you do mobile units inside an urban community? Can you then provide other options? Do we do navigation? We're very big at navigation here Levine Cancer Institute. We have a Spanish-speaking navigator just for those patients. It actually overcomes communication issues. Trying to call in to the actual Cancer Center and again, comes back to building trust.
So I think it's important to, A, take your community boards and your focus groups, all of these areas-- talk with them. Find out what is important in your community, and what are those barriers? What are those obstacles? And then sit down and think about what can we do? And sometimes, aim for the stars.
DEEPAK VADEHRA: No, I think that, that is definitely a great example of out-of-the-box thinking and being able to take something that's vitally important to the community. And it definitely can have a great impact on our patients being able to access the things they need, and that's not just once cancer is diagnosed. That's before the diagnosis is made and for screening. So that's a really, really wonderful example that you gave there.
So we've talked a little bit about the barriers, what we see as issues, and some practical resources that providers can use to help. But at the crux of the issue, really, is policy, and what we need to do at that policy level to try and really impact and improve the availability of care for our patients.
So I'll start with Dr. Carrizosa. Dr. Carrizosa, what are some of the policy issues that you see as being central to improving access to care for our cancer patients?
DANIEL CARRIZOSA: Well I think, ultimately, when people start thinking about policy, they start getting very worried. And how am I going to change things? I'm just one person. And so, one person can move a mountain with the right, you know, ability or leverage. And so I think you start at your local community, and we can look at things like transportation. What type of transportation is available, or where can people go and get things they need?
I think in the last podcast, they discussed food islands and food deserts. And so therefore, can you use something where you're actually overcoming that, and then increase awareness for cancer screening or trials?
On top of that, then you have to go to state levels, and then you start talking about, well, can you increase broadband? Can you do other things that can actually help? Can you just make there more education happening?
And then, obviously, the national level, people get very worried, and they try to figure out, well, how am I going to change national policy? And one great way is actually through ASCO advocacy. And so they actually are working through different telehealth modernization acts and going every year to speak with our representatives to try and change and make things better for our patients.
So I don't think, you know, you need to feel like you need to become president to change these things. You can do it in your community, you could do it at your state, or you can use an organization, like ASCO, that's actually changing policy or helping to change policy.
DEEPAK VADEHRA: Now, those are all great points. Dr. Guerra, your thoughts about what you feel like the important policy issues that we have to tackle in order to help improve access to care.
CARMEN GUERRA: Yeah, I mean the big one is, of course, the insurance, access to insurance. And we've-- I agree, ASCO and the American Cancer Society, have lobbied for expansion of insurance, first through the Affordable Care Act but now through Medicaid expansions through the state. And I think that, that is absolutely vital for, not just cancer care, but all types of health care for our patients.
I would say, there's a second policy that was just recently approved and that is an opportunity for the clinical trial space. And that's a policy that will now mandate Medicaid, starting in January of 2022, to cover the routine costs associated with clinical trial participation. And in so doing, Medicaid will join private insurers and Medicare, which already do cover those clinical trial-related costs. And so I think with that, we'll have an opportunity, as well, to expand access to the potential treatments of the future to patients who want to participate in trials.
And then the last one I'll mention is that we have been working with a foundation, called the Lazarus Foundation. And what they do is they reimburse patients for the travel-related costs, as I mentioned earlier, and that includes lodging and travel.
But in order for us to be able to do that, we first had to lobby our state Senate to actually create a law that says that reimbursing individuals for those clinical trial participation costs is not undue influence. It's not coercion. And that bill passed unanimously, and similar bills have passed in states like California and Texas and Illinois and Wisconsin, and I think, most recently, Massachusetts, in January of this year.
But doing this state-by-state is not very efficient. And so what we also need is a federal policy with that type of language that allows, potentially, pharma and other sponsors to reimburse our patients for those travel-related costs associated with clinical trial participation.
DEEPAK VADEHRA: No, I think that's absolutely paramount to being able to provide the best care to patients. You know, I think, sometimes, that we forget that clinical trial doesn't mean everything is picked up, cost-wise, in a clinical trial. And there is definitely a standard of care part that somebody has to pay for, right? And I think that is one of the most important things. And I think it's great that we are able to bring awareness and have a sense of what we can do to help advocate for policy changes. And I think that was a great discussion.
I know we could talk about this forever. All three of us are very passionate about this. We're open to doing more sessions about it, but overall, thank you, Dr. Guerra and Dr. Carrizosa for joining us.
I wanted to just mention that as a compliment to this episode, listeners may also be interested in a podcast from cancer.net with Dr. Karen Winklefield. She provides a brief introduction about social determinants of health and the resources available for patients and their families and other tips about finding resources that are available to help navigate the challenges of traversing the cancer care system. So a link to that podcast will be found in the description of this episode.
And so once again, thank you, very much for joining us for this 10th episode of the ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click "subscribe" and let us know what you think about the series by either leaving a review or by emailing us at [email protected]. Thanks, everyone, for their time today.
CARMEN GUERRA: Thank you.
DANIEL CARRIZOSA: Thank you.
LORI PIERCE: Thank you for listening to this week's episode of the ASCO eLearning weekly podcasts. To make us part of your weekly routine, click "subscribe." Let us know what you think by leaving a review. For more information, visit the Comprehensive eLearning Center at elearning.asco.org.
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This episode was originally released July 21, 2021
In this episode of the Social Determinants of Health (SDOH) series, Dr. Shekinah Elmore (University of North Carolina at Chapel Hill) and Dr. Ramy Sedhom (Johns Hopkins University) provide research highlights in Social Determinants of Health topics from the recent 2021 ASCO Annual Meeting, provide context to the research, and discuss clinical implications. View episode slides and COI.
TRANSCRIPT
LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 president of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care, and is not intended for use in the diagnosis or treatments of individual conditions.
Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement. For this series on the social determinants of health, we invite Guests with a wide range of views and perspectives. Some of these conversations may be provocative, and some even uncomfortable.
But ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere. I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table-- voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high-quality, equity for cancer care. Thank you.
SHEKINAH ELMORE: Hi, and welcome to the seventh episode of the ASCO Social Determinants of Health Series. I'm Dr. Shekinah Elmore, and I'm an assistant professor of radiation oncology and urology at UNC Chapel Hill. With me is Dr. Ramy Sedhom, a medical oncology fellow at Johns Hopkins. We're happy to be joining you, wherever you are in the world.
RAMY SEDHOM: Yes, absolutely. This series is part of an initiative proposed by ASCO president Dr. Lori Pierce, focused on increasing oncologists' understanding of the social determinants of health, its impact on patients, and modifiable risk factors for cancer, inspired by Dr. Pierce's presidential theme of equity, every patient, every day, everywhere. In this episode, we will review highlights in social determinants of health topics from the recent ASCO annual meeting, provide context to the research, and discuss clinical implications.
SHEKINAH ELMORE: In the social determinants, some of us might need a refresher, and that's OK, too. So the social determinants, as most of us know, are really those things at the interpersonal, community, social, structural higher levels that pattern health outcomes and access. So it's education, it's health care, its neighborhood and built environment, social and community context, and economic stability in one model from Healthy People 2030. But what we'll be talking about in many ways is at the individual level-- so the individual social risk factors that are lower than the social determinants of health. And then we'll also be talking a lot about race and racism.
And so in terms of racism, the best definition that I have found is by Dr. Ruth Wilson Gilmore. She's a noted geographer. And that definition is that racism is the state-sanctioned or otherwise extralegal production and exploitation of group-differentiated vulnerability to premature death. And one of the benefits of the podcast format is that you can rewind, fix yourself on this slide, and read the definition a few times, like I did when I first came upon it, to just see how straightforward, but how all-encompassing, it is.
And so racism is really a structural determinant of health. It sits above even some of these social determinants that we talk about. It patterns health inequities directly. It also has these interactions with all of the social determinants of health. And I think that that will become clear with the abstracts that we're talking about.
RAMY SEDHOM: Really, really powerful definitions. And with regards to care access, almost 40 years ago, Penchansky and Thomas published their five As of access framework. And the five As, as you can see here, represents affordability. So thinking about what is the cost to patients.
And there's been a lot of work coming out over recent years showing that these costs are increasing for patients directly with time. Accessibility-- what is the distance to location or a particular service for patients throughout the country. Availability-- what is the access to specialists and specialty resources, accommodation, flexible scheduling, and acceptability.
And the reason why we bring up this framework is it's a context to discuss the first of the abstracts that we will discuss coming from Dr. Guerra and colleagues at the Penn Abramson Cancer Center. While published 40 years ago, these issues remain pertinent today. And we know that clinical trials do not operate in a vacuum, but instead mirror a lot of the problems within our current health care infrastructure. And that's what makes this work most impressive to me.
I do encourage all to listen to the oral presentation from the ASCO annual meeting, abstract number 100, titled "Accrual of Black Participants to Cancer Clinical Trials Following a Five-Year Prospective Initiative of Community Outreach and Engagement." So what was the problem they were tackling? The team identified a major gap for full inclusion of minoritized patients in their cancer clinical trials network. And their goal, as highlighted by this abstract, was to increase the accrual of Black participants in cancer clinical trials.
Importantly, they took a multilevel approach. But before thinking about any intervention, they went out into the local communities. They spoke to the patients, to the community leaders, pastors, community advocacy groups, and outreach groups to really listen to what the problems were. And by engaging with those most important stakeholders, did they really think about what were the most important interventions?
And what did these interventions look like? Well the team at the Penn Abramson Cancer Center focused on educational efforts in Black communities dispelling many myths about cancer clinical trials. They also increased touch points and access points for patients to access care. Most importantly, these came through breast cancer and colon cancer screening for both insured and uninsured patients.
One thing that really stuck out to me, very pragmatic and thoughtful in its design, was to make sure that culturally-tailored marketing strategies were also available for patients to see. They worked with pharma to make sure that Black patients were also shown on pamphlets discussing cancer clinical trials. And when thinking about access to care, we know that transportation is oftentimes a barrier, especially for our most vulnerable patients. So they had made sure to have contracts and connections with Lyft and other ride-sharing agencies to make sure that people can make it to the cancer center.
And from the health care infrastructure side, they established new requirements for minority accrual plans, and made sure to use community health workers and one-on-one patient navigation. And what was the ultimate impact of their work? Over a five-year effort, they reached more than 10,000 individuals through various venues. And when looking at their primary outcome, they more than doubled the number of Black patients who were accrued on cancer treatment trials. And they saw up to a four-fold increase in the accrual of Black patients in non-intervention treatment trials.
However, what is most important is they established a new level of trust with patients in communities that they were not before reaching. And they were able to remodel their organizational care delivery infrastructure to address this major gap in care delivery. So what was the hallmark of the strategy and how can we pragmatically implement it in our own institutions?
First, they focused on understanding local needs. Importantly, they established bidirectional relationships, and they made sure to acquire data to show the business case for why this is a return on investment for patients, their local city, and their health care infrastructure. I want to applaud Dr. Guerra and her team for making sure that this was a long-term investment in the Philadelphia area. What first started as a research grant later grew to involve the entire cancer service line, all the way with the director of the cancer center, and making sure to involve their entire organization.
And what is the lesson learned? Well, Black participants are significantly underrepresented in clinical trials. But it is not because they are resistant to participating. Instead, this is likely due to structural, clinical, and organizational barriers.
In our local communities, the underrepresented minoritized groups may look different. Perhaps they may be racial minorities. They may be rural dwellers, adolescents, or perhaps elderly patients, sexual and gender minorities, and so on and so forth. So I'd like to open this up to Dr. Elmore, and see if you have any other comments or thoughts from hearing about this.
SHEKINAH ELMORE: This is such tremendous work. And I agree. I think that it's a testament to so many things. I think that responsive development of interventions is so critical, and that truly, Black patients and Black people want to be included in the things that are meaningful to changing health outcomes. And there's so much here, and I really hope to see more efforts like this in both trial enrollment and for standard of care enrollment.
RAMY SEDHOM: Absolutely, and hats off for ASCO advocacy for really pushing forward the CLINICAL TREATMENT Act, which made sure to ensure that clinical trial costs were also covered. This was a landmark decision that came in December of this previous year. [AUDIO OUT] area. And we look forward to seeing this implemented on a larger scale through partnerships with ASCO in future years. And with that, I'd like to transition to our next abstract that Dr. Elmore will lead us through.
SHEKINAH ELMORE: Great, thanks. So this abstract, "Financial Toxicity, Symptom Burden, Illness Perceptions, and Communication Confidence in Cancer Clinical Trial Participants," the first author is Dr. Subha Perni and the last author is Dr. Ryan Nipp, both of which I know well from MGH. And so the problem here that they were trying to address and explore is that trial participants are at high risk for adverse effects from financial toxicity. But we don't really know that much about what the scope and type of those adverse events might be.
So with this study, they prospectively enrolled trial participants from MGH for about two years, and they saturated their sample with those that were already referred per their request for financial assistance. And so they assessed financial toxicity in these two ways, both asking these participants about financial burden overall of care, and then focusing in on trial cost concerns. And then they also asked, using standardized validated measures, about patient-reported outcomes. So physical and psychological symptoms, illness perception, and communication confidence. How confident are they in communicating with their care teams?
The results are interesting. 200 patients-- so 57% in this group noted that they had financial burden overall, and 41% with trial cost concerns. Those that noted financial burden were more likely to be young patients, which makes sense. And trial cost concerns, those were more frequent among patients with lower incomes. Both of these were significant, and I think that that speaks to the validity of these constructs of financial toxicity.
And then this is the most interesting part. Financial toxicity was associated with greater physical and psychological symptom burden, negative illness perception, and lower communication confidence. So the bottom line here is that financial toxicity was associated with worse patient-reported outcomes across all domains that were measured. Lots of future questions here.
So how might financial toxicity operate in different clinical settings? These are trial participants at a designated cancer center. How does that work in community oncology practices or among non-trial participants? How might financial toxicity moderate some of those other social risk factors or social determinants of health? We know from other health outcomes that if you look at Black Americans and white Americans with the health outcomes disparity, that disparity sometimes widens as you climb socioeconomic strata.
And then how might financial toxicity influence oncologic outcomes? More physical symptom burden, more psychological symptom burden, worse communication, that could all lead to worse oncologic outcomes. So lots of programmatic implications here. I think prospective identification of financial toxicity risk, those patients who are at risk for that, and then aligning that with social and economic interventions. But this certainly aligns with the previous abstract that we discussed, another lens on why people might not participate in trials, and just the financial burdens that care can bring to patients, and the fact that it impacts the very care that they're getting.
RAMY SEDHOM: Yes, absolutely. Such great work by Dr. Perni and Dr. Nipp and their team. I think we're just scratching the surface, as you mentioned, with financial toxicity and its implications on patient care and the caregiver experience as well.
So all in all, I think the concluding remarks we could probably make is that equity is a simple concept to grasp, but very complicated to execute and measure for success. We do want to thank our authors who did put time and effort in their careers to opening up our eyes, and Dr. Pierce for really making this the highlight and the theme of her tenure as ASCO president. So for those listening in, thank you for joining us for this episode of the ASCO Social Determinants of Health series.
To keep up with the latest episode, please click Subscribe. Let us know what you think about the series by leaving us a review or by emailing us at [email protected]. On behalf of Dr. Elmore and I, thank you for listening in.
SHEKINAH ELMORE: Thanks.
[MUSIC PLAYING]
VOICEOVER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.
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This episode was originally released August 23, 2021
In this Social Determinants of Health (SDOH) episode, Dr. Narjust Duma (DFCI) moderates a talk with Dr. Danielle McCarthy (University of Wisconsin-Madison) and Dr. Erica Warner (Harvard Medical School & MGH) on tobacco cessation as a modifiable risk factor and how clinicians can respectfully engage with their patients on this topic. View COI.
TRANSCRIPT
LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 president of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care and is not intended for use in the diagnosis or treatments of individual conditions.
Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement. For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative and some even uncomfortable. But ASCO is committed to advancing equitable cancer care for all individuals. Every patient, every day, everywhere.
I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high-quality equitable cancer care. Thank you.
NARJUST DUMA: Welcome to the eighth episode of ASCO Social Determinants of Health Series. I'm Dr. Narjust Duma, and I'm the associate director of the Cancer Care Equity Program at the Dana-Farber Cancer Institute. With me is Dr. Danielle McCarthy, associate director for research and the Center for Tobacco Research and Intervention at the University of Wisconsin-Madison. I also have the pleasure of having Dr. Erica Warner assistant professor of medicine from Harvard Medical School and assistant investigator for Massachusetts General Hospital.
In this episode, we will discuss tobacco cessation as a modifiable risk factor and how clinicians can respectfully engage with their patients on this topic. I would like to thank Dr. McCarthy and Dr. Warner for being here today.
ERICA WARNER: Thank you.
DANIELLE MCCARTHY: My pleasure.
NARJUST DUMA: Moving forward, we address Dr. McCarthy and Dr. Warner by their first name. We're colleagues and friends, and this is a friendly conversation about a very important subject. So we're going to start with a few questions, and they're going to give us their great insightful comments.
First, we want to speak about the stigma with tobacco use. There's a lot of stigma associated with tobacco use and subsequently with lung cancer. This affects all patients, but it can be worse in some communities versus others. Dr. Warner, can you speak to us about this stigma with tobacco?
ERICA WARNER: Yes, certainly. I think stigma is a really important issue. And I'm doing some work around this right now with cancer patients. I think that anti-smoking campaigns have been amazingly effective really at spreading the message that smoking is associated with a long list of negative health outcomes.
I think the most well-known being the link with lung cancer risk. And over time, as smoking rates have declined in the United States-- focus is mainly on the United States, but I think some of these comments are relevant for other places. As smoking rates have declined, you've seen that the populations that continue to have the highest rates of smoking are largely lower socioeconomic populations in the US now.
And so I think this combination of the sense that messaging has told us that smoking is, quote, unquote, "bad," that marginalized populations tend to have higher smoking rates currently, coupled with this idea that smoking is just a poor choice, a bad decision that any given individual is making, leads to smoking and ultimately people who smoke being stigmatized in our society today. And I think there's a lot that we can do to try and combat this, but really focusing on this idea that smoking is a poor personal choice that someone is making.
We know that there has been lots of advertising that has been targeted at specific communities to try and get them to smoke and even now that we're not allowed to have smoking advertisements on TV and on billboards in the way that they used to be, there are still many ways in which these communities are being targeted, as well as recognizing that smoking is an addiction. So there are plenty of people who smoke, who recognize that it can have bad consequences for their health. They don't wish to continue to smoke but are struggling for smoking cessation.
And so I think that really all of us, and as we'll talk later about providers, need to approach smoking and individuals who smoke with more empathy.
NARJUST DUMA: And connected to that question, we have seen marketing that is targeted to certain populations. So while living in the Midwest, I have a very close contact with Native Americans. And the amount of mail these populations receive about smoking, like you turn 16, and you get an advertisement in the mail about here's your first Marlboro package for free.
And this can be for the two of you, how is this targeted marketing that also affected women in the 1970s and '60s in which is smoking was associated with weight loss, like if you want to stay thin or slim, you need to smoke. So how this has affected tobacco in the past and currently now with this targeted marketing to populations.
DANIELLE MCCARTHY: Yeah. I can certainly speak to that in Wisconsin. We see, it's not just marketing at point of sale. There is direct marketing, as you mentioned. There are also just a greater concentration of tobacco retail outlets in certain communities. So there's just more access.
And the Wisconsin African-American Tobacco Prevention Network has done a lot of really great work reaching out to retail sites, convenience stores, corner markets, to try to encourage them to verify a customer's age before they sell tobacco and also gotten them to agree to no menthol Sundays. Like they've had some days where they just won't sell menthol cigarettes because menthol has been so aggressively marketed to African-American communities.
And they've gotten these retailers to agree to this and to buy into this, that this is a social justice issue. It's not just a matter of commerce. It's a matter of equity. And it's really exciting to see that even people who make a little profit on selling tobacco are willing to modify their conduct to address these issues, at least in a small way. And so if we see a menthol ban enacted on a broader scale, that could have a big positive impact.
NARJUST DUMA: Thank you for your comment, Dr. McCarthy. We have seen some changes at the corporate and institutional level, such as made by CVS to stop to sell tobacco. And this is very linked to your comment. What has been the role of health care institutions in promoting tobacco cessation? I know we have talked about also being reactive to be more proactive, but what has changed and what can change still?
DANIELLE MCCARTHY: Right. A lot has changed. We now assess smoking status along with height, weight, and blood pressure. It's now considered a vital sign because it's the leading preventable cause of death. So knowing your patient's tobacco use status and addressing it is really important. Knowing it and doing nothing with that information is not very helpful. And so the next step is really important.
And we know that from population studies that only about half of patients who walk out of a doctor's office walk out and say, yeah, the doctor talked to me about my smoking and offered me something. And so we want to get that up to 100%.
And we think that health systems can implement changes to make that happen. And we've shown that if you integrate some prompts and reminders into the electronic health record, that that can greatly increase the rates at which treatment is offered and that about 12% or so of people who come in off the street for another reason to your clinic will agree to set a quit date within the next 30 days and accept treatment. So that's pretty impressive, right?
So even though the majority of people say they want to quit smoking, that doesn't mean that they want to do it today. But if you ask them today, more than 1 in 10 will probably say, yes, I will agree to treatment. Sign me up. I'm willing to quit within 30 days. So you really can intervene. Health systems can support that by creating workflows that are efficient and effective and connect the patients who smoke with cost low-barrier treatments.
For example, State Tobacco Quit Lines that don't charge for their services and now offer pharmacotherapy and free phone coaching or counseling. So that's something that we've been working on here in Wisconsin. And multiple health systems have now adopted electronic referral to the State Quitline as one of their standard options that they provide for patients who smoke.
The other thing is that 52 cancer centers in the country are now part of an NCI-funded initiative called the Cancer Center Cessation Initiative to more proactively address smoking in cancer settings. And so if you're working in a cancer center, odds are that they're participating in this program and that they're developing some sort of initiative to try to improve the rates of addressing tobacco use among people who present with cancer.
NARJUST DUMA: And the follow-up question, which is a little bit out of script, is have we seen differences in smoking cessation counseling across racial/ethnic groups and across gender? And you can spend a little bit more on this, Dr. McCarthy, if you would like.
DANIELLE MCCARTHY: Yeah. Sadly. We have. And even though we see that motivation to quit is higher among minoritized racial groups in the US and that more quit attempts are actually made among minoritized groups than among white people who smoke, that the rates of achieving cessation are historically lower.
What I think is really exciting about these proactive system changes is we actually have seen higher uptake of treatment among African-American patients, among Hispanic patients in some models, not all models, and especially high uptake among Medicaid-eligible patients, where smoking rates can be as high as 30%, compared to about 14% in the general population.
So where there is great need, there's also great interest in treatment and great receptivity to treatment. And I think that's incredibly exciting and encouraging, that maybe if we were to universally offer cessation treatment, we would see that the treatments were getting where they have not gotten before.
If you just wait for a patient to bring it up, it's not going to be the patient who has the greatest economic stress, greatest social stress who's going to say, you know what's on the top of my agenda today is quitting smoking, it's going to be the most resource to patients who do that.
And so if you want to address these inequities, I think you have to bring it to the patient where they are. And I think that's what's exciting about these system changes. So far, what we've seen is that they seem to enhance equity rather than exacerbate disparities.
ERICA WARNER: I think that's such an important point. And I think it resonates across all of our health equity work, is that if you leave it up to the patient or the provider that has to at each point of interaction make the decision about whether or not to offer something, whether or not to ask for something, that's when disparities creep in. And so we have to make it automated. We have to make it standard of care.
NARJUST DUMA: And that's a very important point. And to our listeners, there are preconceptions that certain populations will not be interested, when in fact, the data has shown the opposite. There are several psychosocial aspects associated with smoking. It is an addiction.
And I think providers should consider that. And this question goes to our guests. How can our understanding of these psychosocial aspects help providers and their conversations about cessation with patients? And now we start with Danielle.
DANIELLE MCCARTHY: It is an addiction. It is a powerful addiction. Untreated, the relapse rates are higher than 90%. It is a relapsing and remitting chronic condition. And there are neuroplastic changes that happen with just a few exposures to nicotine that can be long-lasting. Now, some of those can be reversed by quitting, but they take a long time.
The other thing that is really tricky about tobacco that led us to be confused about whether it was addicting or not for a while is it's not as frankly intoxicating as some other substances. So you don't see a clear intoxication. And the withdrawal symptoms are marked primarily by two things, negative mood and craving. And you don't see the same kind of withdrawal that you see with opioids or even alcohol.
And so for a long time we thought, well, this is just a habit. It is not a habit. There are neuroplastic changes that we know happen and that make it really challenging to quit. And we're asking people to quit in environments in which tobacco is incredibly easy to access. It's still fairly cheap, even considering taxes and price increases. And it's available in the grocery store or the pharmacy and at every gas station.
So it is just embedded in the environment in a way that makes a reliance on willpower and self-control not a great way to go. And so that's why we really advocate for pharmacotherapy to help manage the withdrawal and give the self-control a chance to win in this environment that's really challenging to quit.
ERICA WARNER: I would echo all of that and just add that I think that up front we have to be open and honest with patients, that we recognize that it's an addiction and that it's hard to quit. And that it may take multiple attempts to be successful. And that's not failure. That's a process that you're going towards for a goal.
Because I think it can be disheartening for people who have an earnest desire to quit and find it hard and are not able to on their initial attempts. But we don't want that to be a barrier to continuing to try. And we can support that, as was just described, with medications to help ease some of the symptoms and also trying to provide referrals or other support that can help them address some of the social factors that are associated with smoking.
So if you are trying to quit smoking, and you have someone in your household or multiple people in your household that also smoke, that's going to make it more challenging for you to quit. So to the extent that we can involve the household or the family in smoking, I think that that can help and particularly helps marginalized populations to try and quit.
NARJUST DUMA: Thank you for those comments. And some of the basis for these episodes and podcast is that many of us did not receive training about social determinants of health or how to obtain the information appropriately without being biased or making the patient feel bad about their behavior. So what are some of the comments or questions that providers should completely leave out when addressing smoking cessation or just smoking status? I would start with Danielle.
DANIELLE MCCARTHY: So we like to not start with a yes or no question. Do you want to quit smoking? That's too big an ask. You're going to get too many nos because that sounds scary. That sounds like, are you talking about today?
I don't want to do it today. So we advocate starting it as a conversation. Let's talk about your smoking. I have some resources that I can offer you. I can help you with your smoking. I can offer you medication. I can connect you with counseling. Would you be interested in changing your smoking.
So we're not necessarily saying, let's go from 0 to 60 in three seconds right now, because I got to go to the next patient. We're saying, let's have a conversation. I have something to offer you. Now, let's talk about whether you're interested. So make sure that you get the message across that you have treatment options to share before you ask, are you ready to do this? And sometimes even offer treatment with people who are just willing to cut down.
You could offer treatment to people who are willing to try treatment, even if they're not sure they're ready to quit. That is where we're going with treatment is to say, you don't have to know that I'm setting a quit date on October 1, and that's definitely when I'm going to quit smoking, you could start treatment and see how it goes and then make a decision about whether you're able to go to 0 or whether you just want to cut down by half.
NARJUST DUMA: Erica, which other comments or questions do you think your providers should leave out when addressing smoking cessation?
ERICA WARNER: Yeah I think that there's been a fair amount of work done that shows that positive messaging that emphasizes the benefits of quitting can be more effective than negative messaging that's focused on scare tactics and emphasizing the harms.
I think many people are well aware of the potential harms of smoking, but I think emphasizing that quitting sort of no matter where you are in your experience of quitting, no matter where you are in your cancer journey, for example, among individuals diagnosed with cancer, that there are benefits to quitting. And that, again, we have ways in which we can help support you with medication, with counseling, with other supports that can facilitate this for you.
NARJUST DUMA: Well, thank you to the two of you. We are shortly running out of time. But we want to finish this podcast with tips, because it's very important to share little pearls of wisdom for two of you, experts in the field. I'm no expert. I'm a lung cancer doctor, and I have learned tremendously from the two of you.
So what are some of the tips for providers and also patients or family members to help get these conversations started? And why are we asking for these tips? Because often patients with cancer are not offered smoking cessation counseling. So Danielle, what are one or two tips that you recommend for a provider to get that conversation started?
DANIELLE MCCARTHY: So I would refer people to the National Cancer Center Network Smoking Cessation Guideline, which provides really helpful algorithms. So what do I do if my patient tells me they quit two days ago? So that doesn't mean that they're quit for life? So what do I do with that?
What do I do with someone who's willing to quit within 30 days versus who isn't? And it has a great list of resources and treatment recommendations. These are the pharmacotherapies that are recommended as a first-line, and here are some special considerations for people who are on chemotherapy, et cetera. It's a really great resource.
And also know that there are Tobacco Quit Lines in every state. Every state has a free Tobacco Quit Line available. And that can offer coaching, which can be a great adjunct to the pharmacotherapy that you might provide.
NARJUST DUMA: Erica? A few tips for our listeners.
ERICA WARNER: I don't know that I have that much more to add than what we've said thus far. I would just emphasize this idea of approaching conversations with empathy. I think that we just did some focus groups around women smokers and lung cancer screening.
And we asked them about their interactions with providers around smoking. And many of them described a kind of adversarial interaction, where they felt like the provider was just mainly focused on the fact that they smoked and that was bad and they should quit. And they couldn't really get past that. And I think that's a barrier. It makes patients shut down.
I think providers feel uncomfortable if a conversation is approached that way. And it doesn't end up being useful, I think, for either party. And so, again, I think some of the tips we've shared around empathy, around acknowledging that it's challenging, around making it a conversation about a process as opposed to a one-time let's do it now kind of thing, would all be very helpful.
NARJUST DUMA: Well, thank you for those tips. To our listeners, it's important that we know that we're not doing a good job while addressing smoking cessation with our patients with cancer. We all can do a better job. It is important to practice empathy, like Erica mentioned, and also to avoid yes and no questions, like that Danielle mentioned. Come from a place of cultural humility because it's an addiction more than a choice.
So thank you for joining us for this episode of the Social Determinants of Health at ASCO. To keep up with the latest episodes, please click Subscribe. Let us know what you think about the series by emails to [email protected]. Thank you, everyone.
[MUSIC PLAYING]
SPEAKER: Thank you for listening to this week's episode of the ASCO eLearning Weekly Podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive eLearning Center at elearning.asco.org.
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This episode was originally released May 27, 2021
Dr. Demetria Smith-Graziani (University of Texas) moderates a discussion with Ericka Hart, an activist and sexuality educator, and Dr. Kemi Doll (University of Washington) on the historical and structural reasons for patients’ mistrust of the healthcare system due to systemic racism in medicine, with insights from both the clinician and patient perspective.
TRANSCRIPT
LORI PIERCE: I’m Dr. Lori Pierce, the President of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care, and is not intended for use in the diagnosis or treatments of individual conditions. Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed an ASCO position or endorsement. For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative, and some even uncomfortable, but ASCO is committed to advancing equitable cancer care for all individual – Every Patient. Every Day. Everywhere. I have dedicated this vision to my term as ASCO president. These conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what they look, receives high quality, equitable cancer care. Thank you.
DEMETRIA SMITH-GRAZIANI: Welcome to the fifth episode of ASCO Social Determinants of Health Series. I'm Dr. Demetria Smith-Graziani, and I'm a clinical fellow at M.D. Anderson Cancer Center. I'm joined today by Ericka Hart, an activist and sexuality educator, and Dr. Kemi Doll, a health equity researcher and gynecologic oncologist from the University of Washington.
This series is part of an initiative proposed by ASCO President Dr. Lori Pierce focused on increasing oncologists' understanding of social determinants of health, its impact on patients, and modifiable risk factors for cancer. Inspired by Dr. Pierce's presidential theme of equity every day, every patient everywhere, in this episode, we'll discuss the historical and structural reasons for patients mistrust of the health care system due to systemic racism in medicine within the clinician and patient perspective. So it's important to know that race is a social construct that continues to affect the health of marginalized populations. We have laws and practices that date back to chattel slavery, and clinicians really need to understand each patient's identity within the appropriate historical context in order to provide optimal care and engage in meaningful research to improve outcomes.
The health care system has not proven itself to be trustworthy in the past. It's still not trustworthy today. And there's a long history of institutional discrimination against racial and ethnic minorities, sexual and gender minorities, people with disabilities, and other marginalized groups that continues today and affects the patient-provider relationship. We'll focus today on anti-Black systemic racism within health care, and this will provide a foundation that we hope will encourage further discussion about other forms of discrimination within health care.
Thank you both so much for joining me today. We'll start with the first question, and that's that conversations about trust and health care among the Black community are usually centered around the Tuskegee study of untreated syphilis in the Negro male. But there are many other instances of clinicians and researchers engaging in unethical medical neglect and experimentation on African-Americans. So what other historical and current events should clinicians know about and what resources should they be using to stay informed? And we can start with Dr. Doll.
KEMI DOLL: SURE. So I think history is vital because without understanding our history, it's very hard for us to make sense of what's happening around us. And I think that the US study of untreated syphilis is-- in many ways, a medical education obscured the contemporary racism and the contemporary exploitation and mistreatment of Black people in the health care system. And so my first-- in terms of what else do people need to know-- is that they need to know that horrors as terrible as the syphilis experiment continue today all the time. I don't think you have to look far to find these incidences.
I will point out Dr. Susan Moore, a Black woman doctor, who died just a few months back being mistreated in a hospital system in the region where she practices and could not get care to the point where she was able to verbalize, I'm going to die. Because I am being mistreated, I'm not going to make it, and she didn't. So I want to gently remind us that to have to pull back to the syphilis experiment is demonstrating a willful not seeing, a willful choice not to see what's happening to us every single day.
The other thing that I would say for clinicians or researchers that want to stay abreast is that everything impacts health care. So the current trial of Derek Chauvin right now for the murder of George Floyd is an example of racism and how we value Black life. And so we need to understand as clinicians that when you walk into a room-- and now thinking about the oncology world that I'm in, the cancer world that I'm in-- and you are for example, trying to have a discussion with somebody about the risks and benefits of a certain treatment and survival and their life and maybe even trying to have a conversation that maybe it's time to stop treatment because I don't think you're going to make it and that patient is Black, you need to understand that that's happening in the context of us understanding that our lives do not matter to the same extent that other people's do just walking around on a daily basis.
DEMETRIA SMITH-GRAZIANI: Great point. Great point. Ericka, anything to add?
ERICKA HART: Yeah, for sure. Thank you for saying that, Kemi. That's brilliant and I do think it's important to be thinking about how this is continuing to show up contemporarily as folks will hearken back to the past as if we are now in a new day, and we are 100% not. But I do think what's important to talk about is whose stories get told. The focus now is on the Derek Chauvin trial due to the murder of George Floyd, but there wasn't this much attention, I would say, around Breonna Taylor's case and the fact that it wasn't actually addressed.
And even again, another marginalized community is Black trans people. When Black trans women die, what then is the national conversation? It doesn't exist. And I think that has a lot to do with the bodies that we are saying are worthy to be considered. And so what we talk about when I get so frustrated about the Tuskegee experiment being repeated over and over again is the erasure of Black femmes.
So J. Marion Sims is a pseudo medical provider who operated on countless Black femme people without anesthesia and then was named the father of gynecology. And then we come into the 1920s with Margaret Sanger and the experimentation of birth control experiments and the sterilization that continues to happen to this day. And what was happening is that Margaret Sanger used Black folks to say W. E. B. Du Bois was on-- I always say, "DeBwa"-- Du Bois is their name. They're from Massachusetts, so I'm going to give them spice.
W. E. B. DuBois really worked alongside of Margaret Sanger's eugenics project to essentially eradicate disabled folks and Black people and also went all the way to Puerto Rico to essentially attack and harm Black Puerto Ricans to create this birth control for white people. And then coming to the 1950s, we have Henrietta Lacks and the experiment on her body when she went to John Hopkins for actual care and the lack of informed consent. So I get frustrated when the focus is always on the Tuskegee experiment just as much as I get frustrated when we talk about police brutality being focused on Black cisgender man. There are so many folks who get impacted by the state, and often times we don't even hear their names because the media has construed who we see as important. And beyond the media, whiteness says whose identities are most important.
And it's important that when folks are studying medicine that you understand that you are also indoctrinated in this idea that certain people's identities are more valuable than others. And oftentimes, I'm told that there isn't much conversation around racial and social justice, gender justice at all in medical spaces. And I would say my resource is Medical Apartheid by Harriet A. Washington. It is necessary reading for anyone who wants to do anything in the world that relates to people's bodies beyond the medical spaces. I think it's important that you understand how folks bodies have been regarded in this country.
Another book I just got is called Medicalizing Blackness-- hold on, let me give you the author-- by Rana A. Hogarth. This is the book. Also, highly recommend-- it's just you have to do your research and really be applying this. Again, like Kemi said, it is not a function of the past.
It is happening currently. We can look to maternal mortality to really get the continuation of medical experimentation. I'm not a linguist, but even the word experiment has a lot to do with using someone to prove something.
So even inside of that, there is so much that we don't know that's not even really covered in these books. There's so much that has been buried. So yeah, that's what I would say.
DEMETRIA SMITH-GRAZIANI: Great [INAUDIBLE].
ERICKA HART: Thank you.
KEMI DOLL: May I have one more book Deirdre Cooper Owens, Medical Bondage, which focuses on the history of-- I love the pseudo. I love pseudo-physician. I'm going to start using that. Thank you, Ericka. A pseudo-physician J. Marion Sims, so thank you.
ERICKA HART: You're welcome.
DEMETRIA SMITH-GRAZIANI: This transitions well into a question about how does medicine as an inherently racist institution actually address these failings? One of the things that's been focused on recently is increasing diversity, increasing representation within medicine.
ERICKA HART: Yeah, so diversity and inclusion is ineffective. And what it does is it creates this idea that if you have cookie dough-- cookie dough without the chocolate chips is already kind of brown, right? But let's just imagine that it's mostly white.
So you have cookie dough, and then you're like, OK, you're not going to make chocolate chip cookies without chocolate chips, so you throw in the chocolate chips. That's diversity and inclusion. The basis, the foundation of it, is still white. You haven't done anything to uproot or change or acknowledge the harm that has been caused. What you are now doing is throwing Black people and non-Black people of color into the space to say, OK, look we got some Black doctors here.
But then, how do you address the fact that most medical schools are impossible to get into? The barriers that set up to actually get into medical school are incredibly financially impossible. And when Black doctors are practicing, they get so much racism that they experience from patients-- patients saying things like, I don't want that doctor. I don't want to work with them. What then is the impact on the doctor?
And then, can a Black doctor actually be politicized in their highly political position? Or do they have to essentially have-- I don't want to say minstrel show-- but perform Blackness in a way that's palatable to white people so they can keep their job? It has to go beyond identity. Identity will not save us. I want to know what your politic is, and diversity and inclusion is consistent with doing that as a way to absolve white institutions of their racism.
KEMI DOLL: If I could plus one, heart, like everything Ericka said times 10. I 100% agree especially regarding the point about identity. And it's not just about, I think, Blackness. It's about, I mean-- I don't know how to say this word-- but visible blackness, I'll just say. I mean, it's about the--
We are very hypervisible. Black physicians are hypervisible, especially in academic places. And I have to speak there because that's my experience.
So what happens is you walk in the door, and 30 seconds after you walk in the door, your face is on a poster. Somewhere, you in marketing materials, girl. You're already there.
And then on top of that-- so you're very visible. You just started. The scrutiny about what kind of doctor you are and the quality of care that you can provide is ramped up immediately even up and over what would be for a normal person starting.
Then you add on the layer of exactly what Ericka is talking about, which I have certainly experienced, is the also higher bar that patients have for you. Because they walk in, they're like, oh, you're my doctor. Now all of a sudden, you're reciting your pedigree, you're reciting how many cases of X you've done, you've done all of this stuff, plus the microaggressions that happen on a daily basis from staff who are supposed to be reporting to you but feel a type of way about reporting to a Black woman or a Black femme in a certain kind of position.
So you add on all of that. And so then, I say you add on all that, and then you turn to the Black doctor and you say, you're the solution to medical racism. It's ridiculous, it's insulting, and it's actually just racism. I agree 100% that simply having a Black doctor is not going to fix racism, and my perspective also is that it's necessary but not sufficient.
So we're definitely not getting anywhere without Black doctors. However, I personally did not get into my politic and understand race, gender, and the intersection of race, gender, and health and racism as it applied to my particular area, GYN oncology and endometrial cancer, until I was through medical training, through subspecialty training, and deliberately spent years consuming sociology and anthropology and equity frameworks, which just gives you a sense. Because I'm a Black woman watching all of this happen in front of me as a trainee.
If you do a four-week course in the summer on racism, you're not doing anything because it's about the embeddedness everywhere. It's about how we talk about Black bodies. It's about how we talk about race as a risk factor instead of racism as a risk factor. And I can just speak personally it's a journey out of that and then to turn around and look at it and then to say, now I am deliberately staying because I am deliberately trying to deconstruct.
And I do think that that saves lives. I do know that being in my position and a Black woman walking in with the politic and understanding that I now have is the difference between her getting the care she needs and not getting the care she needs. I've had people come to me as their third or fourth opinion because they can't have a respectful conversation with an oncologist who can listen to them and their concerns and who understands that everything isn't black and white. The things that we measure aren't always the things that matter to everybody.
And so it's both/and for me. We do have to grapple with the problem that Black people in medicine can obscure the progress towards anti-racism in medicine and towards deconstructing these things when all they are is identity and there's no effort to understand and define a politic. And I understand that makes us vulnerable, but it's always going to make us vulnerable until we remake the system. So that's what I would add.
DEMETRIA SMITH-GRAZIANI: Yeah. Thank you. It's really, really important points. So building off of all of that-- so let's say people are saying, OK, I'm learning to look through this lens where we're going to infuse the practice of learning about racism throughout medical training.
OK, now what do I do now? I'm a physician. I'm a nurse. I'm a health care practitioner. How do I use the power and privilege that I have to then to combat racism in medicine when I see it to help my patients? Who's going first this time? Maybe we can start with Kemi this time.
KEMI DOLL: It's-- OK. So what can I do is a hard question to me because there's a billion things to do, and so I just want to acknowledge that that question is sometimes used to not do anything. There's always something to do.
If the issue was you had high infection rates after all of the surgeries, people would have 30,000 things that they would try immediately tomorrow. So the first thing I just want to-- I have to say is stop asking that question. And in addition to reading something-- you got book recommendations already-- start doing something different. Just try. Iterate. Do that first.
Secondly, I would say that look in your own house. So what we know-- I'm going to quote a study and it's going to be terrible I can't tell you where it was. I can't remember anything about it. But it was about-- I think it was cardiologists, and they surveyed the survey cardiologists. And they were like, there was a study that came out that demonstrated that specifically-- getting to the intersectionality point-- specifically Black women, when reporting cardiac symptoms suggestive of a heart attack, are not referred to get cardiac catheterization to literally save their lives compared to white men and women and Black men.
After this, there's a study that asks cardiologists they say, OK, well, where do you think racism exists in the health care system? And it's like, out in the health care system, at my own hospital, in my own practice with me and my patients. And you might imagine what that looks like.
Oh, it's definitely out there. Maybe it's in my hospital. It could be in my practice, but not with me.
And so my answer to that question is acknowledge that there's racism in your practice because you literally live and breathe white supremacy. So acknowledge that it exists. We're not fighting that question.
And then because I am a research person-- I apologize-- get your data. Pull your-- stop assuming. Pull your data right now and look and see who's not doing well.
To Ericka's point about trans, non-gender binary people. Where are they? Are you asking people? Do you even have that data?
And then going on-- race, ethnicity, ethnicity breakdowns within the Asian population. Are you even looking to see how are we doing on these metrics? Who's getting care and who is not?
That is like the bare minimum of what you would do if you said, today, I am trying to change something. You would go get your own data. You wouldn't keep asking people, what should I do? So that's my answer. But also, just listen to Ericka.
DEMETRIA SMITH-GRAZIANI: Yes. Yes. [INAUDIBLE] kind of ruled this into how this affects your day-to-day experience as a patient, tying that together, hopefully. Yes. [INAUDIBLE]
ERICKA HART: Yeah, sure. I'll tie it together as well. I think everything that can be said and what I'll add is the lack of intersectionality, the lack of looking at intersecting identities that influence how folks receive or don't receive health care. One point that I feel like when we're having these conversations about medical institutions is that we leave out insurance companies, and insurance companies are a major barrier to actually accessing health because it is politicized in this country. It is connected to the government, which it should never be.
Folks should have access to health care. That should not even be a radical statement. Everybody should have access to health care, and we don't. I'll tell you right now-- and this is not an exaggeration-- I pay $660 a month for health insurance, and that is just because I don't want to leave my oncologist.
I don't want to have to search for another oncologist. I want to stay with this oncologist for the next-- I've been with them for five years. $660, right? And I'm in a privileged position where I can afford that, but it is still a lot of money. That is ridiculous.
So addressing the barriers-- my breast cancer surgeon actually saw me when I did not have health insurance. I don't know that-- I won't say his name because I don't know what you all to be finding him or doing nothing to him. That's my homie.
He really saved my life. He was willing to see me even though I did not have health insurance. Stop putting up the barriers of red tape. Right now, what we're seeing in states like Arkansas and Mississippi are racist and transphobic governors and politicians who are trying to stop trans young people from accessing health care.
The government is going to do what the government is going to do. What are you going to do when folks come into your office? Are you going to tell a trans young person, oh, the government says that I can't treat you? Hell no.
So my suggestion to medical providers, to folks who work in any field that serves people, is to risk losing your job. Put your job on the line for somebody else. Do not not give me care so you can continue to collect a check. How do you sleep at night?
What needs to happen is that medical institutions need to go away. They are consistent with supporting-- they work with the state clearly. They are informed by the state. Therefore, they are also informed by police. We are inside of a police state.
All of these things are connected. As a Black queer non-binary femme who has to navigate medical institutions on a regular basis, it is terrifying. And it is exhausting how most even when I get at the door and I fill out the copious amount of paperwork that ask me for everything besides how much butt hair do I have.
There's nothing on there that ask me my pronouns. There's nothing on there to ask me my gender identity. There's most likely to be an assumption of who my partner is or who I love or how I love, which is now triggering. I'm now stressed out to be at the doctor.
I'm also a person of size. I am inside of fat activism spaces I am considered a small fat. So any time I go to the doctor, there are some sort of correlation made with my health connected to my fatness.
It's pseudo-science. Anything you're talking about in terms of race has then a function of anti-Black racism, how I have been harmed in terms of racism, how my body is weathering due to the constant racism and transphobia and classism and fatphobia that I have to navigate. Don't contribute to that. Cut it out.
DEMETRIA SMITH-GRAZIANI: Yeah, it's kind of-- it seems complex, but it is kind of simple, right?
ERICKA HART: It's so simple. That complexity is a function of white supremacy as well-- to make it complex, so we could constantly be, like Kemi said, what do we do? And what do we do? It's nonsense.
You know what to do. You are unwilling to do it because it could eventually, hopefully lead to this institution falling apart. Great.
I want to go to the doctor underneath a tree. I don't care if the red tape to get to the technology has to be addressed. And that's all I mean.
DEMETRIA SMITH-GRAZIANI: All those barriers.
KEMI DOLL: Exactly. I just want to point that out though because I think in medical discursive spaces when people hear Ericka saying, we don't need the institution. We don't need all of this stuff. We need to dismantle it.
That gets skewed into we don't need anything, like all of this-- we're going to go back to bloodletting. That's not what we're talking about. But what we're talking about is we don't have to couple those things together.
We don't have to couple innovation and knowledge together with power and class and exclusion. Those can be decoupled. And I don't know, I'm like-- I don't know. My view is always like that is the goal. And then, what am I doing today?
What am I doing today that is disruptive? If you're doing something today disruptive, you're disrupting, and you're disrupting every day. Sometimes, that disruption is in the form of how you're talking to somebody as the first person who's talking to them as a person, as a whole human being, as a whole non-defective human being, and seeing everything that's on top of them not as something intrinsically wrong with their body, but as a function of the experience that they've had.
But in addition to that, in addition to an individual disruption of thinking about people as problems to solve, then disruption can also look like, for example, not allowing the same appointment length of time for a patient who speaks your language and a patient who doesn't. Just think about that. If all of your appointments are 30 minutes and you see-- or 15-- and you know somebody is coming to see you that y'all don't speak the same language, that means that you have to have a translator.
By definition, by the structure, that person gets half as much time with their doctor. They pay the same amount, they have to deal with the same insurance, all of those things, and yet they get half the amount of time because you're spending time going back and forth. That is a systematic disruption that's available to you right now.
To say, schedulers, an hour every time somebody comes in who does not speak my language? Double the appointment time because that's the bare minimum of equity. I mean, there's more things. I don't want to pretend like that's the solution. But there's an infinite number of things that you can do while still choosing to be in a system that disrupts that system is how I think about it.
DEMETRIA SMITH-GRAZIANI: I think we're always afraid of rocking the boat. But really, we have to think about, well, what are the consequences? And sometimes the consequences aren't really that bad, and that all depends on your personal identities and how you might be [INAUDIBLE] within a larger institution. But a lot of times the consequences aren't that bad if you push that boundary.
I wish I could continue this conversation all day. There are so many gems here, but I know this is just the beginning of the conversation. I really hope this is something that continues among oncologists, among other clinicians, health care providers, researchers. But we'll end there.
But thank you so much for sharing your time with me. This was amazing. And thank you all for joining us on this episode of ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click Subscribe. Let us know what you think about the series by leaving a review or emailing us at [email protected].
SPEAKER 4: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.
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This episode was originally released June 9, 2021
In this Social Determinants of Health (SDOH) episode, Dr. Randy Vince (University of Michigan) moderates a talk with Dr. Robert Winn (VCU Massey Cancer Center) and technology innovator and cancer survivor, Sylvie Leotin (Equify Health) on solutions for rebuilding patient-provider trust and communications, with insights from the clinician and patient perspective.
TRANSCRIPT
LORI PIERCE: Hi. I'm Dr. Lori Pierce, president of the American Society of Clinical Oncology. Thank you for tuning in to this discussion on social determinants of health and their impact on cancer care. The purpose of this podcast is to educate and inform. It is not a substitute for medical care, and it is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement. For this series on social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative, and some even uncomfortable. But ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere. I have dedicated this vision to my term as ASCO president.
These conversations bring many voices to the table, voices that we need to hear in order to move forward and find solutions. We hope you learned new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what they look like, receives high-quality, equitable cancer care. Thank you.
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RANDY VINCE, JR.: Hello, and welcome to the sixth episode of the ASCO Social Determinants of Health series. I'm Dr. Randy Vince, Jr., a fellow of urologic oncology at the University of Michigan. Today, I'm joined by Dr. Robert Winn, the director of the Virginia Commonwealth University Massey Cancer Center, and Dr. Sylvie Leotin, who is a technology innovator, cancer survivor, and a recent recipient of a $750,000 Health Equity Innovation Award.
This series is part of a new initiative proposed by ASCO president Dr. Lori Pierce, focused on increasing oncologists' understanding of social determinants of health, its impact on patients, and modifiable risk factors for cancer, inspired by Dr. Pierce's presidential theme of equity, every patient, every day, everywhere. During the fifth episode of this series hosted by Dr. Smith-Graziani, there was a deep dive into the impact of structural racism on medicine, both historically and contemporarily.
As a country, we find ourselves at a point of inflection. Many citizens and health care providers are starting to grapple with the fact that both interpersonal and structural racism impacts various aspects of our daily lives. As health care providers, it is imperative that we understand this history and how this affects our patient-provider interactions. To build on episode five, we will discuss the importance of patient-provider relationships and eliminating cancer disparities.
So the first question goes to you, Dr. Winn. I know you have made community engagement an essential pillar at the Massey Cancer Center with the goal of reducing and ultimately eliminating cancer disparities. This initiative is a critical step. But many times when we discuss social determinants of health, we talk about factors outside of the health system. But I'm wondering if you can comment on how patient-provider communication influences cancer disparities.
ROBERT WINN: No, absolutely, and thank you for that. And I think that the work that's happening at the ASCO right now is just outstanding. I wanted to actually also go back to making sure that we don't conflate individual needs with social determinants of health, because there sometimes is muddying of individual needs with social determinants.
And I want to make sure that as we talk about it, and through the lens of social determinants, that we understand that that's built on structure. And part of that structure is the doctor-patient communication, but also the medical community's communication to communities, which is frequently very one direction.
And even when we talk about being patient centered, frequently we don't have the patient at the center of our discussions. It becomes almost this very colonial-like— but benevolent colonialism, right? It starts from a good place. But it becomes this very benevolent, colonial flavor to it where we're talking for people, we're talking at people, but we're not talking with folks, nor with communities.
And so I think that to keep my answers short, we are going to have to, as a health profession, have a little bit of grace and a little bit, just a touch more of humility to understand that where we have— although well meaning, and certainly we're armed with knowledge, but they are too in communities.
And I'll end with saying that while we also talk about our patient-centered approaches and communities as being illiterate— health delivery system illiterate or scientifically illiterate, they'll remind you that we are, too, illiterate. And so trying to talk at people in this unidirectional way will give us some results, but not the best results. And I think there's many more, much more productive results to come if we have a little bit more humility of making sure that we are not just engaging but involving community.
RANDY VINCE, JR.: So the next question I'll pose to you, Dr. Leotin. First, I'll say this. You have an impressive background that spans multiple disciplines. And so I have a two-part question for you. First, with your expertise as an innovator and your personal experience as a cancer survivor, I wonder if you can share your thoughts about what can be done broadly to improve cross-cultural patient-provider interactions.
And the second part of the question is, you were recently awarded a large grant to collaborate with Emory School of Medicine. Can you share some information about your project and the innovative solutions you're developing to help reduce cancer disparities?
SYLVIE LEOTIN: Thank you for your question, Dr. Vince. First, I would like to stress, [INAUDIBLE] the patient first, that cross-cultural patient-provider communication is worse than many health providers imagine. And this directly affects disparities. There was a recent study, as an example from Genentech, that showed that 50% of Black, Latinx, and LGBT patients have delayed or discontinued their care because they didn't feel understood by their providers.
So second, to answer your question, I agree with Dr. Winn, and I applaud your leadership in transforming community engagement. As you said, I think that it's also part of the solution. I think that another part of the solution is really improving patient-provider relationship inside the hospital. And I see that a lot of providers are not looking at this when, as a patient, I can tell you that it is really an essential component of reducing disparities. And I'm going to try to unpack that.
So we talk about trust, we talk about mistrust, and we talk about patients needing to trust the health care system. But we have to realize that trust is a two-sided process. And it's not incumbent upon the patient to trust the health care system if the health care system keeps perpetuating mistrust. So my position is really that providers need to step up.
As Dr. Vince was so eloquently saying, they need to step up to inspire trust. And more than inspire trust, they have to stop fueling and perpetuating mistrust in their day-to-day interactions with patients. So I think that the providers are not equipped today to build trust and have good relationships with cross-cultural or racially discordant patients. I don't see this taught in medical school, and I don't see it in continuing education today.
So people will tell me that now we are starting to see anti-bias trainings and why this is a positive thing. I do not think that these trainings are sufficient to really have an impact on the patient experience of Black and Brown patients. I think that we need something that is a lot more practical, a lot more pragmatic, experiential, and, as Dr. Winn was saying, patient centered to really transform cross-cultural patient-provider relationships, which leads me to my grant.
So I'm happy to share that I recently won a $750,000 Health Equity Innovation Grant from Genentech in collaboration with Emory School of Medicine. And the grant is going to fund some research with Black patients and oncology providers at Emory Winship Cancer center, but also at the Grady Hospital in Atlanta. And we are also going to pilot an innovative training, which I designed, which is going to help improve cross-cultural patient-provider communication.
This training is coming from my background as a multicultural cancer patient, but I also have 20 years of experience in innovation and in human-centered design. And before I got cancer, I developed a model that is really the underpinning innovation about this training that will really give providers an experiential understanding of what it's like to be a Black patient in the health care system. So I'm not going to take the whole time.
RANDY VINCE, JR.: No, that's amazing. That's amazing. Thank you. And I'm looking forward to seeing the research that comes out of this and really provide some useful techniques for providers to implement in their daily interactions with patients. So I'm definitely going to be looking out for that, Dr. Leotin.
For my next question, I'm going to pose it first to you, Dr. Winn. And then, Dr. Leotin, you can weigh in on this as well. So we know that the history of structural and interpersonal racism can influence these patient-provider interactions. And so I wonder if you can provide thoughts on how, specifically, providers can establish a trusting relationship with their patients of color, given that this history we just discussed is so ingrained in so many of our daily interactions.
ROBERT WINN: Yeah, I think on the practical [INAUDIBLE] patience matters. And I mean that. So I think this is where, sometimes, well-meaning physicians get very frustrated, that they will say, well, I've been decent to you, and I've been pleasant to you, and I'm not getting your trust. Martin Luther King once said it best when he says, let's not get decency confused with equality.
And there is a level where just because you're decent, doesn't mean that you're building trust. Decency should be expected as a health profession. So I'm sometimes confused when people say, well, I've been nice, and I'm trying to be nicer. What does that mean? So it goes beyond just decency.
So trust is built up over time, number one. And I think I heard it once best from one of my mentors who says, trust is gained drop by drop by drop. But trust is lost, and when it's lost, it's lost in buckets. And I'll say that there's been reasons why we need to have more patience as health professions to understand that just because you've been good to someone for a year or two years, doesn't gain their trust. It may actually gain you some decency back, but that's not the same as trust.
So I'm going to say that people want me to give them a protocol because, as academics, everything is protocolized, right? And they want me to give them a protocol for, how do I build trust? And I'm going to tell you the following, that your mom and your grandmother probably taught you this a way long time ago.
Be nice. Have grace, have humility, and patience. Show up and show out every time. And do it whether there's— whether you feel that there's being trust built or not. Do it anyways. And if you do it anyways just because it's the right thing, over time you'll get people and communities' trust.
RANDY VINCE, JR.: Dr. Leotin, your thoughts?
SYLVIE LEOTIN: So I really love this answer. I would like to add my perspective because in the training that I'm developing, and I will be piloting at Emory University, we are addressing some of this from a different vantage point. I'm a patient. I'm an innovator. I'm not an MD, so I think differently.
And my belief is that in addition to what you were describing, Dr. Winn, there is an element of empathy and cross-cultural empathy that is often missing. And this is not about the health care industry. This is our society at large. And I think this is happening because we have a hard time taking the perspective of someone else without projecting our own projections, filters, biased assumptions on top of them and thinking, oh, this is what I would do if I were them, instead of really what it's like to be someone else.
And I love this quote from Harper Lee that said, you never really understand a person until you consider things from their point of view, until you crawl under their skin and walk around in it. So I developed a training to actually do this in a simulated environment. What I'm seeking to do is to give this really groundbreaking perspective to providers on what it is like.
What does it feel like at the visceral level to be a Black patient in health care undergoing and constantly facing biased interaction? And I think that until we really understand what it's like, it's hard for us to fix it, because racism and bias— they operate below the level of our consciousness, many times. And yes, I'll stop here. I'll say more later.
RANDY VINCE, JR.: Yeah, yeah, but I'd like to build on that a little bit. Because I know many of you have spoken prior to recording this podcast, and you said that in your interaction with many other Black oncology patients, there was often a feeling of being unheard or feeling dismissed by their providers.
We often talk— and Dr. Winn mentioned this earlier— about illiteracy when it comes to health care information. And often, people cite health insurance as a barrier to health equity. But we know that a lot of these disparities exist even in insured, educated patients. And so I wonder if you can share some thoughts on why you think this disparity exists, again, even when Black patients are insured and well educated, like yourself.
SYLVIE LEOTIN: Yes, I'm glad that we're making this point today. I personally interviewed several— many— Black patients with cancer. And I have to tell you that all those people had insurance. Many had great insurance. Many were educated. And they were still experiencing disparities in cancer care. And I would like to give you some concrete examples.
So there was a woman that I spoke to with stage II cancer. She stopped to take a hormone therapy drug because she didn't know what it was for, and the side effects were bothersome. The oncologist had not even explained what this drug was for, and he had been so disrespectful in their interaction that she never wanted to speak to him again. What happened a few years later is her cancer metastasized.
I spoke to another Black woman who complained of migraines and headaches for two years. The doctor dismissed her and said that, it must be stress. Your work is stressful. It became really bad, and one day she had a colleague at work who told her, did you get the blood test? So she went to get the blood test, and she found out that she had advanced melanoma spread to multiple spots in her body.
There was a Black woman that had, also, breast cancer, who was given a choice between a lumpectomy and a mastectomy. But she wasn't able to get the pros and cons from her surgeon, who was really rushing her to make a decision without information. She decided to take a mastectomy because she was thinking, oh, I'm going to be done faster, and I won't get to do chemo.
Well, after she got a mastectomy, she went to see a medical oncologist. And the medical oncologist ordered an Oncotype DX type test. And it turned out that she had to do chemo. So she was really mad at herself for not answering her question and rushing her into surgery. She felt that if she had been a white patient, she wouldn't have been treated that way.
Fast forward several months, she goes into chemo treatment, and she had many problems. She told me that they didn't want to give her a port for chemo. They said that she had good veins and she didn't need a port. She kept complaining, and nobody listened to her. Those are the stories that are happening. I had my fair share myself.
I'm an Ivy League-educated Black woman. I have four degrees. And I had an instance, I had a core breast biopsy. I was miserably butchered by a barbaric radiologist. He took so many, so many, an insane number of samples on me. And it was the equivalent of getting a lumpectomy without anesthesia. I had horrible post-surgery complications, and many other stories I will share in my book, which I'm finishing and should be published at the end of this year. But as you can see, it's not pretty.
RANDY VINCE, JR.: Yeah, thank you for sharing those experiences because these stories need to be told more because we can learn from them. And really, these stories constantly need to be promoted so we can make progress. So in closing, Dr. Winn, I'm going to post this last question to you. And I just wonder if you can provide your thoughts on how, collectively, a combination of better patient-provider interactions as well as community outreach can help reduce cancer and other health disparities.
ROBERT WINN: Yep, just quickly, I think, again, all data, great and small, is valued in my world. Why community? Because I think that the community— by being honest, by having the humility, by actually doing things differently, we'll be able to better serve our communities because they will give us some better information to help us literally refine our approaches and maybe even refine our questions.
The other thing I would actually add is that we have an obligation to not just— to really serve the community. It also means we should be thinking about, how do we actually have them not at the table but gainfully employed if we want to build trust?
So how do we do it? I think by totally, really engaging with the grace and humility that I know we're capable of, I think we will move the next 50 years— as we have the first 50 years as NCI-designated cancer centers, the next 50 years, I think, we'll do even better because we'll take the community along with us on the ride. As opposed to actually doing things to them, we'll start doing things with them.
RANDY VINCE, JR.: Absolutely. That was a great answer.
SYLVIE LEOTIN: Can I just add something?
RANDY VINCE, JR.: Sure, really quickly.
SYLVIE LEOTIN: Yes, I think that in addition to— in collaboration with talking to the community, I believe that the training that I'm building is going to equip doctors to be a lot more efficient in their conversation with communities. So it's both inside and outside the hospital.
RANDY VINCE, JR.: Great. Thank you. So this conversation has been incredibly enlightening. I want to thank both Dr. Winn and Dr. Leotin for being with us today. So as we conclude, I think it's important to say that while conversations like this are vital to impacting change, words alone won't bring about a kind of change that's needed. So it's of the utmost importance that we all back our words with actions and really engage the community and engage with our patients.
So I want to thank everyone for joining us on this episode of the ASCO Social Determinants of Health series. To keep up with the latest episodes, please click Subscribe below. Let us know what you think about the series by leaving a review or emailing us at [email protected]. That's all one word. And again, it's [email protected]. Also, to access any sources mentioned on the show or to read on Dr. Leotin's recent grant and her company, Equify Health, please check out the show resources.
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LORI PIERCE: Thank you for listening to this week's episode of the ASCO e-learning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.
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This episode was originally released January 21, 2021
In this episode of ASCO eLearning's Social Determinants of Health (SDOH) series, Dr. Jacquelyne Gaddy (University of North Carolina Chapel Hill) moderates a discussion with Dr. Reginald Tucker-Seeley (University of Southern California) and Dr. Katie Reeder-Hayes (University of North Carolina Chapel Hill) on how to take a social history, with a focus on cultural humility and addressing implicit bias. Read more about this topic in Dr. Gaddy’s recent ASCO Connection article.
TRANSCRIPT
PRESENTER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
JACQUELYNE GADDY: Welcome to episode three of the ASCO Social Determinants of Health Series. My name is Dr. Jacquelyne Gaddy, and I'm a fellow in the Division of Hematology and Oncology at the University of North Carolina at Chapel Hill. Today, I am joined by Dr. Reginald Tucker-Seeley, Assistant Professor of Gerontology at the University of Southern California, and Dr. Katherine Reeder-Hayes, Associate Professor of Oncology and a Health Services Researcher at UNC Chapel Hill.
This series is a part of a new initiative proposed by ASCO president, Dr. Lori Pierce, focused on increasing oncologist's understanding of social determinants of health, its impact on patients and modifiable risk factors for cancer inspired by Dr. Pierce's presidential theme of equity, every day, every patient, everywhere. In this episode, we will look at how to take a social history with a focus on cultural humility and addressing implicit bias. Dr. Reeder-Hayes, I think I will start by asking, why do you think the social history and the taking of it is so meaningful and impactful?
KATHERINE REEDER-HAYES: So to me, as a provider, it has always felt that the social history really is serving a dual purpose. One of those purposes is simply the development of rapport and relationship, learning about your patient as a person, learning about maybe points that the two of you have in common or that you may be able to connect about, just as we would in social conversation with any other human being. But the other purpose is to identify social factors that may impact the journey that your patient is starting out on, assuming that you're meeting a new patient. We know that social determinants of health have a huge impact on a patient's ability to stick with their treatment plan, their ability to navigate their way through the health care system, and have direct impacts actually on their physical health. So those are all reasons why the social history really may be as important as any other part of a new patient history and physical exam.
JACQUELYNE GADDY: I want to Pose this next question to both you, Dr. Reeder-Hayes, and Dr. Tucker-Seeley. What are key questions that you guys believe should be asked of your patient when completing the social history? Or Dr. Tucker-Seeley, just for you, like, what are just meaningful things that you should be able to walk away knowing about your patient?
REGINALD TUCKER-SEELEY: Well, I think it's important to understand that, as Dr. Reeder-Hayes mentioned, the things that impact how a patient navigates health care and their ability to adhere to treatment, those things may be happening outside of the doctor's office. So getting an understanding of your patient's life outside of that 10 to 20 minutes that you see them is really important.
So for example, I'm working with some colleagues-- and I'll be talking about this throughout the conversation today-- with some colleagues at the Los Angeles Department of Health Care Services, and we've decided to focus on three key areas. One is housing insecurity, food insecurity, and transportation needs. And so those are three key factors that have been shown to impact how folks are navigating health care, and also, to impact their ability to adhere to treatment.
KATHERINE REEDER-HAYES: So I would add to that the kinds of approaches that Dr. Tucker-Seeley is talking about and the kinds that are pretty natural to folks who work in a public health situation are not the same-- [AUDIO OUT] we were taught in medical school, right? So we were taught to ask about risk factors. It's really an epidemiology-based understanding of what the social history is for.
What have you been doing? Have you been smoking? Have you been drinking a lot of alcohol, doing illicit drugs, sitting around being sedentary instead of exercising, and how did that lead to the health state that you're in now? That's how we were taught as physicians to obtain a social history.
Now, some of these things are still relevant. I'm not saying that they're not relevant. But you can imagine, if this is the first interaction you have with your provider, first of all, it might be kind of off-putting to be intimate about your health habits as the very first encounter with the person, especially when it's the only focus. So you need to move to a more complex model. As Dr. Tucker-Seeley was saying, that focuses on actionable items.
When was the last time we were taught in medical school to ask about how our patient got to the appointment and how reliable their transportation is, and it's highly actionable. And it's also an approach to the social history that's really multilateral. The physician probably can't make the best come on time to pick up the patient for his appointment. There might be a social worker who can get the patient a Lyft coupon or help the patient find public transit or get a volunteer to give them a ride. There are lots of things that a social worker on the team might be able to make that actionable information.
And then, finally, I think the models that we need to move to for social history need to be much more patient-led and patient-centered, so open-ended questions. Tell me something about yourself outside the hospital. What's been your biggest challenge since you got this diagnosis? Let the patient tell us which parts of their social Story. Are most important or most challenging rather than assuming that we have a checklist that's going to hit the right pieces of information if we just go down the checklist.
REGINALD TUCKER-SEELEY: I think Dr. Reeder-Hayes is highlighting that the difference in training from those of us who come from a more public health background-- I trained in public health, specifically, social epidemiology and health and social policy, and we've been talking about the social determinants for a very long time. And so I think making sure that, in addition to having physicians at the table, having social work at the table, having someone from social epidemiology or medical sociology at the table to help the team come up with the best set of questions that are most relevant for that particular practice environment.
KATHERINE REEDER-HAYES: Absolutely. And the last thing I would say is that we are in the era of the electronic health record. Not everything about it is great for patients. But one thing we can do is we can build social history over time.
So if the chart tells you the patient's smoking history you can go deeper in a small amount of time. You can say, hey, Mr. Jones, I saw it mentioned in your chart that at some point, you were a smoker. Have there been some times you tried to quit smoking? That shows respect for the patient, respect for time, and the fact that they maybe already answered this question many times, and it also allows you to get to a point in the social history that's more actionable than just repeating the same questions over and over again.
JACQUELYNE GADDY: Dr. Tucker-Seeley, you mentioned something earlier that I wanted to ask, and I know, Dr. Reeder-Hayes, you'll be able to add to this also. Who do you believe is the best person on the care team to ask these questions? Who should be initiating this conversation?
REGINALD TUCKER-SEELEY: That's a very good question. And I think we often see this in the financial hardship and cancer space where patients want to talk about cost, but physicians may not necessarily want to talk about cost because you aren't aware of what everything is going to cost, so trying to think about what is the best framework or model for thinking through this process. In the project that I mentioned earlier, we developed this framework and it's called Screen, Navigate, Connect, Address, Evaluate.
And so it takes you through the entire process. So not just thinking about am I checking something off of a list that I'm required to do, but also thinking about, how do I help the patient navigate through the process? How do I then connect the patient to the social service that will eventually address that social need? And then investigating whether or not that need was actually addressed, and then an evaluation component that then determines, did addressing this particular need actually impact outcomes or help facilitate the navigation of health care?
It can be a challenge to figure out who on the team should be asking these questions. And I think with this particular framework, you can decide who's going to be responsible for screening. Who's going to be responsible for navigation? Who's going to be responsible for connecting? And thinking within the scopes of practice of the members of the care team, who's best suited for those particular roles?
KATHERINE REEDER-HAYES: That is a great thought. And I think it connects to what I would call the need for professional humility as physicians to realize that-- we have been taught that we have to do it all, but we're not necessarily very good at doing it all. When we walk into the room with the patient, we're faced with a lot of different competing priorities, including the care of their cancer.
I think we can learn something here from the patient-reported outcomes field where what many years of painstaking research have eventually really strongly shown is that doctors and patients in a room together with the doctor trying to figure out what the patient's are in a short space of time, maybe not in real-time as the symptoms are happening, is a way to get accurate information about reported outcomes. You put in a system, patients are able to report this remotely, where they're able to report it in a systematic way, and where there are those screening and navigation components where team members are responsible for responding to those symptoms, making sure they're taking care of, not only does that patient experience get better, but survival gets better.
Cancer survival actually improves when we use the whole team, systematic, and we do screening, navigation, response, evaluation. I think there were some patient-reported outcomes for physical symptoms. It's likely to work in terms of the social components of their illness as well.
REGINALD TUCKER-SEELEY: And two, I want to make sure to point out we know that system change is hard. Doing something new is going to be a challenge. So there was a recent report by the National Academy of Medicine, a consensus study focused on integrating social care into health care delivery. And they introduced a framework as well that really focuses on the awareness within the organization of the importance of social needs, adjusting the clinical workflow to the integration of these new social factors. So I think that report can be quite helpful for any department or organization that's looking to attempt to integrate social care into their current clinical workflows.
JACQUELYNE GADDY: Dr. Tucker-Seeley and Dr. Reeder-Hayes, something that both of you just mentioned makes me think about when we're in medical school, we're taught this format. You do this, you go from A, you get to Z. You don't make any detours. If you get to a different stop before you were supposed to, that's the wrong thing.
So Dr. Reeder-Hayes, at what point in the history do you think it's important to start taking the social history? Do you do it when you first meet the patient? Do you do it at the end? Where do you think that should be structured?
KATHERINE REEDER-HAYES: So I think where we tend to put it is where it has come in the traditional format of an office visit notes or a history and physical, which is kind of down towards the bottom of when you're talking to the patient maybe right before you get to the physical exam, so you're distracted. You've already asked them about 85 things. And I would really challenge folks to think about putting social history up front and changing that standard flow.
I think there are a lot of advantages to putting social history up front. The big one is that it follows the conversational norms that we have outside of medicine. So if you walk into a bank to talk about getting a loan or you're getting to know a new neighbor, you're not going to start with the business. You're going to start by getting to know the person a little bit. And so that may feel more natural in the interaction.
And it also has an opportunity-- if we view the patient as a whole person and we give them a chance to share something that they think is meaningful or interesting about themselves, that they can just open up. I had a fellow come in last week in my clinic-- we were seeing a male breast cancer patient, and sometimes, these patients feel really awkward in our clinic. This is a clinic that's not particularly built for men. All the other patients in the waiting room are usually women. Things just sometimes don't feel culturally welcoming to them.
And he said, well-- he just told me about his encounter with the patient before I even met the patient and he said, he was kind of stiff and he wasn't saying much and his wife was doing much of the talking, but then I just switched gears and I ask him what brought him to the area, and he said, a grandchild had been born and they moved here for that, and I asked him about his granddaughter and his face lit up. He showed me pictures on his phone, and that changed the whole character of our encounter with the patient because he was able to share that. So that's one practical thing.
Also, there may just be barriers to care that will come out in the social history that are going to-- at first, I started to say derail the conversation, but not derail it. Really take it in the direction that's necessary to get anything else done with the patient's care, whether that's that they're actually having overwhelming worry about how they're going to do this care that's making them so anxious that they really can't even absorb complex medical information. I recently saw a patient who it turned out her financial worries about how she was even going to pay for the care she had already gotten and her diagnostic workup were so large that most of the options I was going to offer she didn't see options for her. And so if we had spent five minutes talking about them without my being aware that we needed to incorporate cost and financial help into the conversation we would have wasted all our time. So I think there are ways that even if using the social history up front isn't what we were taught, it may, in the end, make the visit more effective and time better spent for both the patient and the physician.
JACQUELYNE GADDY: In that same topic, what are other things that I would say mainly focused towards trainings, what can they do to become more comfortable when interacting with patients on this particular level?
REGINALD TUCKER-SEELEY: I think it's going to be important for moments of personal introspection because I think this can be very challenging given how you describe medical training is for physicians to get comfortable talking about these issues. So first, recognizing, what are some places where we're not comfortable?
So my personal research program focus is on financial hardship and cancer, and I know that one of the things that we as a country don't like to talk about are finances. And that's like-- I used to start talks with, if I asked everyone in the audience what your annual salary is, who's going to tell me what that is? No one's going to talk about it. So realizing what are the areas that you are personally not comfortable, sort of getting to the heart of how can I become more comfortable, or at least comfortable enough to be having these kinds of conversations with patients. I think also thinking about this needs to take a systems perspective, so thinking about where in the clinical workflow do I feel most comfortable having this conversation, but also, thinking about where in the clinical workflow do the patients feel most comfortable having this conversation, and trying to figure out sort of where is the happy medium for where these kinds of conversations need to happen as patients are navigating cancer care.
JACQUELYNE GADDY: What are potential challenges that one may experience when taking a detailed social history? And this is a twofold question. With that same part of the question, how can one address specifically cultural humility and implicit bias?
REGINALD TUCKER-SEELEY: So I think I've shared with both of you briefly about how I approach navigating health care as an African-American gay man. So I trained at Harvard. So I have master's and doctoral degrees there. So it's part of the sort of you're there, you're going to get multiple Harvard T-shirts, Harvard sweatshirts and everything, and sweatshirts and tee shirts for your family.
But I am conscious of when I enter a health care facility, how I'm going to be perceived. And so I will make sure I'm wearing a Harvard sweatshirt or a Harvard T-shirt, and I'll make sure that I tell the physician what I do for work. And I realize that that changes the conversation.
It changes how the physician talks to me. I think it makes the physician view me more as a partner in the interaction as opposed to several preconceived notions that she or he may have about how I'm going to approach care and how I'm going to navigate care. And so I think from the physician perspective, sort of figuring out what can you do so that those of us that have to navigate care are not trying to adorn ourselves with the symbols that will garner respect from you so that you will treat us with respect as a patient.
KATHERINE REEDER-HAYES: And I think I would just mirror that story by saying that when we walk into the room as a provider, there are a lot of things that patients are going to assume about us on our appearance, perhaps what we're wearing and how we interact, whether we stand or sit, eye contact we make, and those things are not only informed by what's happening in the present moment, but also, by this person's previous experience, positive or negative. What were there experiences with other people in white coats been? Do they see a white coat as a message that I took effort to make sure that I wasn't bringing germs from my home to them and that the things I was wearing were clean to take care of them, or do they see it as a symbol that I'm trying to make myself an authority in the conversation with them?
So it could mean either of those things, and neither of those things is necessarily completely right or wrong. But I need to be conscious of all those possibilities. And those listening skills are really important, both the listening to the verbal cues, and also to the non-verbal cues.
Is a patient looking down on the floor? Are they avoiding eye contact with me? Are there some cues here that something about our interaction in that room is making them uncomfortable or not feeling like they can share?
I think a simple rule of thumb for trainees is ask more questions-- [AUDIO OUT] more statements. If you're asking questions, assuming that you're asking them in a polite and respectful way, you're going to continue to elicit information. You don't elicit a lot more information by making declarative statements.
And it may be that your declarative statements need to wait a little bit until you've asked enough questions to really understand where the patient is coming from. Patients will usually tell you the extent to which they might feel comfortable discussing something if you ask, how deep they want to go on that, or how much information they want to receive about a certain topic, or whether they're open to help on a certain topic, whether it be smoking cessation, or help with financial barriers or transportation barriers. I think if you ask, most patients are willing to tell you, and they're also going to communicate to you how much they want to share and how much, at this time, they're still going to hold back. So we just work on our communication skills, not only the talking ones, but the listening ones.
JACQUELYNE GADDY: I think this topic is so important. I know we're getting close to time for our viewers, but one last question. I want to know, how do you think that you can correct inaccurate and/or damaging information so that other care providers can access this?
KATHERINE REEDER-HAYES: So I think that's a challenge of the electronic health record. To the extent that systems and organizations can work to make the social history structured, I think that enables us to go back and fix structured information that may then be shared into or pulled into others notes. If others have documented unstructured information in their notes that is clearly not our information to correct, that can be really problematic.
I think if it's truly an egregious error or an error that might impact significantly on the patient's care, for instance, their spouse has recently died and the person has documented that their spouse is living, something like that, they've documented that the patient is a smoker and needs to stop, and in fact, the patient is a non-smoker and they're just going to continue to be asked about that. You can contact your colleague and say, hey, usually, these notes are editable for a long time. Do you mind going back and correcting that? That's inaccurate. We may not be able to correct every small inaccuracy, but we can make our own documentation appealing enough that maybe others will borrow from our accurate information and not from the previous inaccurate information.
JACQUELYNE GADDY: As we come close to time, Dr. Reeder-Hayes and Dr. Tucker-Seeley, I want to thank both of you for spending time and educating all of those in our viewers, and I want to thank you for joining us for this episode of the ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click Subscribe. Let us know what you think about the series by leaving a review or by emailing us at [email protected].
PRESENTER: Thank you for listening to this week's episode of the ASCO e-learning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive E-learning Center at elearning.asco.org.
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This episode was originally released February 24, 2021
In this episode of ASCO eLearning's Social Determinants of Health (SDOH) series, Dr. Hala Borno (University of California San Francisco) moderates a discussion with Dr. Fumiko Chino (Memorial Sloan Kettering Cancer Center) on understanding the cost of care and ways care providers can help patients and caregivers mitigate financial toxicity.
TRANSCRIPT
[MUSIC PLAYING] SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
[MUSIC PLAYING]
Welcome to the fourth episode of the ASCO Social Determinants of Health Series. I'm Dr. Hala Borno. I'm an Assistant Professor of Medicine at the University of California, San Francisco, and a genitourinary urinary medical oncologist. I have the pleasure today of being joined by Dr. Fumiko Chino, who's a radiation oncologist for Memorial Sloan Kettering.
This series is part of a new initiative proposed by ASCO President Dr. Lori Pierce, focused on increasing oncologists understanding of social determinants of health, its impact on patients, and modifiable risk factors for cancer. Inspired by Dr. Pierce's presidential theme of equality every day, every patient, everywhere.
In this episode, we will look at issues of financial toxicity and related barriers to cancer care. Again, thank you Dr. Chino for joining us today. First, I thought I would ask what do you consider to be financial toxicity and how can it be a barrier to access to care.
FUMIKO CHINO: Thank you so much for having me. I am very passionate about this topic. I have dedicated my life to it. And it's actually the reason why I am in medicine. I think financial toxicity is a very-- it's a hot topic nowadays, especially with the rising cost of cancer care and then I think highlighted by the COVID pandemic.
But financial toxicity is really a patient-facing problem, meaning it's how patients deal with the cost of their cancer care and how that affects the quality of their care, their access to care, and ultimately can affect their survivorship from cancer. Personally, interested in it because of my own experiences with financial toxicity. And it's really the reason why I ended up in medical school at all.
I think realistically, it's like the old adage where you haven't-- unless you ask about a problem, you're not going to identify it. And from my own experiences, I know that there are patients that you will see in your clinic that are having problems with financial toxicity, but they won't necessarily talk to you about it until they're given permission. And so I think this topic is increasingly important. And it's something that I'm really happy that we're spending some time with today.
HALA BORNO: Dr. Chino, thank you again. You really have been quite open about your personal experience, a very powerful experience to highlight this critical problem. Do you mind sharing a little bit about that story. And how does that impact the way that you interact with patients in your own practice and also inform your research?
FUMIKO CHINO: I think that my story, my husband's story, and ultimately our struggle through the health care system really highlights a lot of what this whole issue is about the social determinants of health. And I think the lens I bring to it is someone who's been on both sides of the stethoscope so to speak.
So my husband was diagnosed with cancer at a very young age, when he was in his 20s. And unfortunately, we dealt with some very poor quality health insurance, which did not have a lot of coverage for cancer. And we had a lot of out-of-pocket expenses for care.
Ultimately, I had to quit my job to help take care of my husband. And when he died from cancer, when he was less than 30, it left me with an incredible burden of debt related to his cancer treatment.
I think the flip side of the access problems, in terms of insurance, is that I have a very privileged background. Unlike a lot of patients with cancer and families with cancer, I am from a pretty wealthy family. So I was able to rely on the support of my family to help me get me back on my feet. And even, again, when we are suffering these great costs, we had people who could loan us money.
And I think that privilege that we had really helped us stay at least minimally afloat with our struggles with financial toxicity, instead of completely going under. And I think that really highlights some of the disparities that for patients that don't have wealth in their family, or people that they can rely on to loan them money, or flexibility within their jobs, financial toxicity of cancer treatment really hits them so much harder.
HALA BORNO: Yeah, that's certainly a really powerful experience. And I do in a moment want to hear how that informs the research questions you ask, but I do want to first highlight that you brought up two really important points.
So the first point is this notion of coverage, where access to insurance doesn't necessarily mean access to affordable insurance. And that this issue of cost sharing and out-of-pocket costs that patients bear can be quite burdensome and compromise their circumstance. And I think your story certainly highlights that.
The other piece that your story highlights is this notion of wealth versus household income and how different individuals enter their cancer journey from a different circumstance. And that circumstance of wealth versus household income can have huge ramifications on their experience of financial toxicity. So I think that that's a really critical point to make.
Could you share a little bit about how that experience now has become really the cornerstone of the research questions you're asking in your academic career? And then have you carved out certain solutions to identifying these among patients that you're seeing?
FUMIKO CHINO: I think that the experience that we had in terms of navigating the health care system, and the obstacles, and the rat race that cancer care treatment is for everyone, especially coming from a background of having-- a high educational and a family in medicine, and just how difficult it was for us really highlights for some patients how it can be insurmountable. And these problems of access, or even getting the right diagnosis.
So my husband was given, I think, three false diagnoses before he was actually told he had cancer. And then from cancer, he was originally told he had non Hodgkin's lymphoma. And he ultimately ended up having a high-grade neuroendocrine carcinoma.
So realistically, those barriers to even getting the right diagnosis are even worse for patients that may have a lower education standard or may have built-in racism within the system, which is holding them back from being able to trust their health care team and being able to get the proper diagnosis and the proper treatment for their care.
I think our experience has really focused me on trying to think about highlighting the populations that really could benefit the most from an intervention, and then piloting specific interventions that may actually help people receive the high quality, high value cancer care that everyone really deserves. I think within the United States, we are-- we like to think of ourselves as being leaders. And I think that to call ourselves leaders, we need to lead.
We cannot live in a society where a quarter, a third of our patients are really suffering huge burdens related to the cost of their cancer care. In highlighting a little bit about what you said before about wealth, we already know that, for example, Black families have one tenth of the wealth that white families have in the United States. There was a really compelling Brookings evaluation of that.
So if you think about just the out-of-pocket burden for cancer care eroding wealth, what we're talking about with financial toxicity is something that can really be durable within families. So not just eroding the financial security of a patient, but also potentially compromising the educational success of their children or causing housing instability within the family. That affects the entire family unit.
So thinking about these issues are really what has galvanized me to consider what are the next steps to actually getting people the care that they need in a facilitated way. And I think-- again, not to bring up COVID again, but that's really highlighted the gaps in the US health care system and the patients that are disproportionately affected by burden.
So if you think about someone who has now potentially lost health insurance, or does not have the job flexibility, or paid sick leave to deal with a cancer diagnosis, we're talking about an entire group of patients that are now going to have even worse cancer outcomes.
And we know that, for example, patients that do have-- the working poor, actually, those with essentially borderline private insurance, that they really do suffer the most in terms of financial toxicity in terms of their out-of-pocket costs, and their coverage gaps in terms of-- what their insurance insufficiently covers in terms of their cancer treatment are the highest.
And that's really, in terms of the people to really think about how do we help them, how do we get them the care that they need, that's really what I'm most interested in pursuing.
HALA BORNO: Really important points that you brought up. I think we can't ignore our context, the COVID context. And certainly, this current pandemic has shone the spotlight on the relationship between disease and our financial circumstance and in a variety of ways.
And so I think it emboldens us to understand and to evoke change in our clinics, in our health systems, in our communities to have conversations around financial toxicity and the relationship between financial toxicity and cancer care. And also emboldens us to start operationalizing, assessing patients for financial toxicity.
So when I have conversations with my colleagues and done my own research in this space, I've observed that clinicians often feel ill equipped to manage issues and problems around financial toxicity that they may identify in clinic. And, of course, when you feel ill equipped to navigate a problem that you identify, it may, of course, make you reticent to even identify it.
And so what are some potential solutions that our colleagues who might be listening to this may be able to take with them in their clinics and practice in order to start unpacking and addressing this problem?
FUMIKO CHINO: No, I think that's a really good question, because I think that's the most common concern that I have from providers when I talk to them about financial toxicity. And I am so pumped in terms of like we need to address it, and we need to be asking patients.
And it's funny, we did a survey of our patients-- this is actually before COVID-- to ask about some things that would actually help their financial situation related to their cancer care. And some of the solutions were honestly very, very basic.
Minimizing wait times so that people could actually get back to work and not have to take a whole day off of work. Having a food or a snack in clinic so that people would be able to actually get some food in them so that they could maybe go back to work. And I think MSK has really highlighted the idea of having a food bank embedded in certain clinics to try to help with food insecurity.
Providing things like parking vouchers, or bus passes, or metro tickets to patients to try to help with transportation. Really basic, fundamental access problems. And I think that the larger issues, outside of just the mechanical issues, is that to realize that we are part of a multidisciplinary team.
I would never treat someone-- I'm a radiation oncologist, I would never just start zapping someone without talking to the medical oncologist, and potentially also the surgeon, to really think about, well, how do we coalesce a good treatment plan for someone.
And I think you can really think of financial toxicity in a similar way, which is we need to bring in all of our potential assets. We really need to think of our assistance within social work, or the social work team, or patient financial services to really rally all of the available resources for our patients.
And I think the thing I would say is that we can lower costs for patients. We can't necessarily lower them to zero. And we can't lower them for every single person, but we can really make a meaningful difference. And it's a matter of getting people the help that they need or sometimes just that little bit of-- I'm going to miss my rent this month-- a little bit of philanthropic funds that can actually tide them over so that they don't fall into a larger hole related to their cancer diagnosis.
The study that I quote most commonly is actually one by Reshma Jagsi from the Michigan group, which found that 1 in 20 Black or Latinx women who are treated for in early-stage breast cancer actually became housing unstable related to their treatment. So they had in early-stage breast cancer, totally curable, totally treatable, and yet ultimately ended up homeless related to the cost of their treatment.
And you cannot help but think that some of that would be preventable if we could just provide people with some acute assistance when they're in need. And again, rally all of the resources around them. And it's not just social work and patient financial services. There's a national initiatives to try to think about how do I lodge patients during their cancer treatment from, for example, the Hope Lodges?
How do I get them to their treatment so that they're not paying for taxis, or they're not trying-- they don't have a car, so how do they get to their radiation treatments? Or how do I rally philanthropic funds to think, well, what about that extra $300 I just really need to pay my light bill?
And there are resources. They're not again infinity resources. But they can actually help our patients. And we just need to facilitate them getting them.
HALA BORNO: I think that's an incredible point. I think what I'm hearing from you is, why don't we look within our own clinical environment, the way that we deliver care, and identify areas that generate burden and areas that could be streamlined? Because while there are some opportunities to address indirect costs associated with care, such as travel, lodging, and there's a lot of innovation in that realm, this notion of economic opportunity loss.
The loss of wage as you receive care is difficult to measure, not measured operationally, and can be quite burdensome. And so if we streamline that health care delivery experience, perhaps we can start addressing the costs that we're making our patients bear in order to receive care. So I think that's a really important point.
And it brings me to a question, is we all acknowledge in the era of COVID-19 there has been a rise in utilization of telemedicine, which may be addressing a lot of these different issues around receipt of care, parking, travel time, waiting in the waiting room. Do you-- tell me a little bit about how you've thought about that approach. And do you think that it's a solution that we should be carrying forward in order to address this notion of financial toxicity?
FUMIKO CHINO: I think that we were all forced to rapidly implement telemedicine because of COVID-19. And I think one of the few benefits of COVID was that it forced us to really think about what are the barriers to telemedicine? What are the potential ways to deliver high-quality, high-value cancer care from a distance? And how-- what are the real true assets and potential risks of that?
And we, actually, within our own group, just recently published something in JNCCN. And specifically my question about the role of telemedicine was, how much was it actually saving patients? And the majority of patients did say, you know what, telemedicine helped. It helped reduce my treatment costs.
I think the flip side of that is that we know that, based on some research that's already been presented, at least in abstract form, that telemedicine has not been rolled out evenly. And so that there are potential racial, ethnic disparities, and socioeconmic disparities in terms of the capacity for someone to get a telehealth appointment to feel that is a trusted conversation and to have just the-- again, the technical capacity, video phone, Wi-Fi, to actually get telehealth in.
So I think that telehealth does present some really good opportunities to improve value within cancer care and to increase affordability. But the pitfalls, I think, are also true, which is that we can't just say, oh, well this is great, everyone I know has an iPhone, so I'll just Facetime all of my patients and neglect the patients that are really struggling.
They don't have Wi-Fi. They're not able to have a fast connection. They're not able to hear you. And they would really benefit from an in-person visit because communication may be a difficulty or trust may be a difficulty. And those are patients that, again, we need to tailor our interventions and make sure that we're using the right tool for the right patient.
The implementation of telemedicine is like precision medicine. We need to actually deliver the best care for the person who's in front of us. And it's not one size fits all.
HALA BORNO: I absolutely agree. I think the social determinants of health, integrated precision medicine, how do you individualize your intervention is key. And if you do use this one size fits all approach, you will likely widen the treatment gap in who we are serving. So I absolutely agree with that. And I think your points are well taken.
I think for our listeners, I really want there to be a tool that they can use in their own clinic as they interact with patients. How do you approach this with patients in your conversation? What is a takeaway that they can have that they can carry with them in their clinical practice?
FUMIKO CHINO: I think that drawing from my own experience and realizing that we were suffering greatly from our cost, and yet afraid to speak about them to our provider, just realizing that sometimes patients just need the OK. So they need you to ask them, are you having problems related to the cost of their care.
And then, you do need to have some small investment, at least, in terms of knowing what the resources are available. And that could be a simple conversation with your patient financial services group or your social work team, and know what resources are available within your own institution.
I think, shockingly, we found that we have great resources here at MSK, and we also have patients who are really suffering. And yet, there's this disconnect, where patients are not being appropriately referred to the resources that we have. And they're suffering in silence. Patients aren't bringing up the topic. Providers aren't bringing up the topic. And so there's this missed opportunity to actually provide the best quality of care tailored to that patient.
So just asking the question and then knowing what potential resources are available, even something as simple as a parking pass. Like, hey, do we have parking passes that we can give patients? You'd be surprised how much that-- just a small piece of paper-- it's 20 bucks-- can really make a difference to some of our patients.
Or even asking, how do we coordinate your care so that you can have a minimal amount of time off of work? How do we facilitate you actually maintaining your health insurance through your job so that you're not worried about not just the lack of health insurance for you, but also for your young kids?
How do we maintain your job related to your-- I again treat with radiation, so it's a daily treatment, typically for a period of weeks. How do we treat you at the right time of day, so that you actually don't have to take more time off of work? So that you actually have income coming in to offset the debts in the bills that are then-- because if you just have debts and no income, it digs you deeper into a hole.
So I think all of these things are part of, again, this idea of precision medicine, which is not necessarily next generation sequencing, but actually generating the right plan for the person in front of you. And I think the first question is always just asking.
HALA BORNO: Absolutely, precision medicine isn't just about genomics and targeted therapeutics. It's also about identifying the unique challenges of patient experiences. And I think you've given me a lot of lessons about what I can carry in my own clinical practice. And hopefully, that can also have a ripple effect on other listeners today.
[MUSIC PLAYING]
Thank you for joining us for this episode of the ASCO "Social Determinants of Health" Series. To keep up with the latest episodes, please click Subscribe. Let us know what you think about the series by leaving a review or by emailing us at [email protected].
[MUSIC PLAYING]
SPEAKER 1: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive eLearning Center at elearning.asco.org.
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This episode was originally released October 26, 2020
In ASCO eLearning’s first Social Determinants of Health (SDOH) series episode, Dr. Ramy Sedhom, MD moderates a discussion with ASCO President, Lori Pierce, MD, FASTRO, FASCO; Abenaa Brewster, MD, MHS; and Katie Reeder-Hayes, MD, MBA, MS on why understanding SDOH’s impact on patients is critical to providing equitable care. We hope you enjoy this episode.
TRANSCRIPT
ANNOUNCER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
RAMY SEDHOM: Hello, and welcome to ASCO's newest podcast focused on the social determinants of health. My name is Ramy Sedhom, and I'm a medical oncology fellow at Johns Hopkins. Today, I am joined by ASCO president Dr. Lori Pierce, professor of radiation oncology at the University of Michigan.
We are also joined by Dr. Katherine Reeder-Hayes, associate professor of oncology and health services researcher from UNC Chapel Hill, also chair of the ASCO Health Equity Committee. And finally, we are also joined by Dr. Abenaa Brewster, chair of the ASCO Prevention Committee, medical oncologist, and professor of epidemiology at MD Anderson. All our distinguished health researchers focused on disparities work.
We are excited to launch this theme in light of the theme as highlighted by Dr. Pierce, equity, every patient, every day, everywhere. Dr. Pierce, why are the social determinants of health relevant? How do they relate to our work at ASCO and to the theme of equity?
LORI PIERCE: Thanks, Dr. Sedhom. Yes, the ASCO theme this year is based on equity, and treating patients with equitable care is at the very heart of what ASCO does. It's what ASCO stands for.
But we know there are factors, including social determinants of health, that can significantly affect the quality of health care that our patients receive, so we're hoping that this series of talks will increase awareness to many of those factors so providers can understand even better what some of the barriers are that our patients are experiencing. So we feel that understanding what they are, that's an important first step in terms of determining meaningful actions that we can take.
RAMY SEDHOM: Thank you, Dr. Pierce. Dr. Reeder-Hayes, any additional comments?
KATHERINE REEDER-HAYES: So I would just add that the reason I think oncologists inherently do care about the social determinants of health is that we care who gets cancer, and we care about the survival of that cancer. That's what we do as physicians. And as we follow cancer outcomes and cancer registries over time, what we realized is that there are a lot of biological things about cancers that determine their outcomes, but there are also many things that determine that outcome of a person's cancer that aren't biologic, and we have put those things together in a large group and use labels like the social determinants of health to understand what those non-biological factors are. But as physicians, as people who want to cure cancer, I think that it's just as important for us to have a good understanding of those non-biologic factors and how they're going to influence our patient's chance of the best outcome from their disease as it is for us to have a good grasp on the biologic determinants that are going to influence our patient's outcome.
RAMY SEDHOM: Thank you. And I think this is a really good time to emphasize that the series is at the intersection of work through the Health Equity Committee and the Prevention Committee as being put forth by ASCO, and the ASCO Education Committee as well. And Dr. Reeder-Hayes, how would you importantly define the social determinants of health?
KATHERINE REEDER-HAYES: So that's a pretty broad range of definitions, because there are a lot of people in health care who have talked about this concept of non-biologic determinants of how patients do for a long time, both in cancer care, and in other fields, like primary care, diabetes, and hypertension research. And so there are several organizations that have put forth definitions. The first one that I would point people to as the World Health Organization. So these patterns occur globally, not just in the United States. And the WHO describes the social determinants of health as the circumstances in which people are born, grow up, live, work, and age, and the systems that are put in place to deal with illness.
So there's this idea that the circumstances that people find themselves in, as well as the structure of the health care system are part of this conversation about social determinants of health. The Robert Wood Johnson Foundation has done a lot of work to help put these concepts into more understandable and everyday language. And so the definition they use is that health begins where we live, learn, work, and play. So the social determinants of health include factors that operate on a few different levels.
So there's the level of societal conditions, social conditions, economic conditions, physical conditions of where and how people live, and where and how people work, and then there are also psychosocial levels, like the patient-level psychosocial factors. And Centers for Disease Control also focus a lot of their work on social determinants at this idea of psychosocial factors at the patient level. So even though the concept is simple, it's actually also very broad. And when people talk about social determinants of health, they can be talking about things that are operating at several different levels, from the structure of the health care system, on down to the structure of the apartment complex where your patient lives. And so you have to think broadly, I think, when you're thinking about analyses for research or how to talk to your patients about social determinants of health.
But the American Cancer Society has recently also put out a paper that tried to help people put these social determinants into appropriate buckets, particularly the ones that really seem to impact cancer care. And so the three categories or domains that they've suggested are structural inequities, so things that happen in a larger society and in the structure of the health care system that impact our patients and how they access care. Secondly, institutional environments. What do the places where we treat cancer look like? What are their structures? And how does that impact our patients outcomes?
And then, finally, living environments. Where do our patients go back to when they go away from the health care setting? So those are some of the ways that we can think about the finding and talking about the social determinants of health.
RAMY SEDHOM: Thank you for sharing that. That's a lot to think about and to consider. Dr. Brewster can you comment on the impact of those social determinants of health in disparate groups beyond race and ethnicity?
ABENAA BREWSTER: So I agree that we're really used to thinking about social determinants of health as explaining some of the race-ethnic disparities that we see in cancer incidence and outcome. But we know that there are other groups that also experience differences in outcomes based on these determinants. For example, characteristics of sex, gender identity, sexual orientation, geography, immigration status, these are all characteristics that are impacted by social determinants of health.
An example that I like to give for the race-ethnic disparity is the 40% increase in mortality that African-American women experience who are diagnosed with breast cancer compared to white women, and that, for a large part, is due to socioeconomic poverty and insurance differences. And in fact, then those characteristics then explain decreased screening, later stage of diagnoses, and then leads to disparate delays and receipt of treatment. There was a really nice paper published in JCO by Jamal and others which showed that insurance alone accounted for about 37% of that 40% increase in mortality that Black women experience who are diagnosed with cancer. And so you can see the great opportunities that are there to make care more equal if you're able to improve access.
And so examples of other groups, for example, we have registry data showing that urban populations, although they have higher cancer incidence, the rural populations actually have a higher incidence of the cancers that are related to tobacco use or HPV. And we also know that rural populations also have higher mortality than urban populations when it comes to cancer, and that's largely driven by poverty, under insurance, socioeconomic status, isolation. And so that's another group that is impacted by those social determinants of health as outlined by Dr. Reeder-Hayes.
And then, lastly, the LGBT community. Although there haven't been a lot of large studies looking at the impact of cancer incidence and outcomes in that community, there have been lots of survey studies that have shown that these determinants of health tend to cluster within those communities. Once again, social isolation, negative patient-provider relationships, under insurance, poverty, and so that's another group where this becomes very meaningful.
And I think kind of what cuts across all of these groups are really characteristics that have been linked to historical discrimination. And so that's something that we see very clearly. And then, we also see it reflected in our oncology population, right? Only about 2% of oncologists are African-American. And so these social determinants of health not only impact our patients, but they impact what our workforce looks like, and then, that, in turn, leads to differences in terms of the patient-provider relationships.
RAMY SEDHOM: Absolutely. And this is a great question to direct towards you as the chair of the Prevention Committee. How do the social determinants of health-- how are they relevant for our cancer patients and our cancer survivors?
ABENAA BREWSTER: Social determinants affect the trajectory of cancer care. And so we've talked about the impact of social determinants of health on cancer mortality and cancer outcomes, receipt of treatment, timing of treatment. So those are all impacts that our oncology patients face. But I would say, in terms of the field of cancer prevention, over the past four decades, there have been significant advances in cancer prevention, vaccine, preventive therapies, high-quality screening. And unfortunately, there are populations that are being left out of those advances that we've seen in cancer prevention.
We also know that maintaining a healthy weight, having a physically active lifestyle, having a nutritious diet with fruits and vegetables also play a key role in cancer prevention. But those are impacted by where our patients live. And so patients who live in disadvantaged neighborhoods may have less availability for these nutritious food choices, and they may have less safe spaces to engage in physical activity. And so while we advance our prevention knowledge and our prevention strategies, we are leaving behind groups of individuals who, based on where they live, and where they work, and how they're educated, are not being able to access those types of advances in cancer prevention, and as a result, we see increasing cancer incidence.
RAMY SEDHOM: And Dr. Pierce, how does having this context or understanding make us better researchers, clinicians, and administrators? And also, how does it benefit our interactions with our patients and our colleagues?
LORI PIERCE: So understanding the social determinants of health, it will make us better researchers, then clinicians, and just better doctors, because it allow us to see how the cancer world looks to our patients, kind of look at the cancer world through their lens. And an example, we have all these groundbreaking therapies, but if the patients don't have transportation and they can't come in, then those therapies are for naught. And I'm going to echo what Dr. Brewster said a few minutes ago. Another example is if we're advocating for patients to maintain a healthy weight, and a part of that is to do exercise, but they can't go out in their communities because they're not in a safe community, then we need to come up with other strategies. So I think it's very important that we understand these issues so we can advise, we can advocate, and we can act once we truly understand the barriers that our patients are facing everyday.
RAMY SEDHOM: And Dr. Reeder-Hayes, can you comment on how the Health Equity Committee is seeking to understand the social determinants of health, their effects on populations, and the actions that can be taken to improve cancer care?
KATHERINE REEDER-HAYES: Sure, so one of the things that the Health Equity Committee has been really excited about and working with Dr. Pierce on, her presidential theme, and also, in entering this conversation about the social determinants of health, is getting more of our members engaged with the idea of knowing our patients and their non-biologic characteristics as a way of being better doctors, as Dr. Pierce said. So the most simple way I can explain the concept is that every patient has a backstory. We know this as doctors. Every patient brings this unique story into their cancer care experience.
And we know intuitively that that story that they bring with them into cancer care is going to impact what their cancer journey looks like. But we also need to acknowledge that it's going to impact their cancer outcome. We already know that it's going to impact how we interact together as a team, patient and provider, but we need to raise awareness that it's also going to impact how the cancer turns out. Because I think that's something our members naturally care about, and I think our members want to understand their patients' cancer care stories,
So as researchers, and as folks on the Health Equity Committee, we would like to help people understand how to obtain the most relevant information about their patient's backstory in the most respectful and efficient and effective way, and then to integrate that well into how they care for their patients, as well as how they shape their research and their administrative roles. So we're excited to be doing that. Now, some of these circumstances are not immediately changeable, and they certainly aren't within the patient's individual power to change, but some of them, at least in terms of how they impact our patient's access to care, are modifiable, either by us as their physician, or by someone else in the health care system, or by someone in an organization that comes alongside the health care system to help, like a private foundation or a philanthropic organization.
If our patient has a barrier to care because of transportation, like the example that Dr. Pierce gave, and they can't get a ride to cancer care, there are actually some ways that we can intervene on that. And there are even people in our health care system who are expert on how to intervene on that, as well as organizations that have volunteers that can help intervene on that. But if we don't obtain the information, we're not going to know, and then we can't bring the strategy to bear to get our patient to that groundbreaking therapy that they get. If they could make it to us, or if we could make it out to them, thinking about innovative ways to deliver care. So those are some of the things that we're excited about in the Health Equity Committee.
RAMY SEDHOM: Thank you for sharing with us a lot of the great work that you're doing, and the ASCO team. On a similar note, Dr. Brewster, can you review with us some of the key contributions related to the social determinants of health from the Prevention Committee?
ABENAA BREWSTER: Sure. Well, first of all, I'm so proud of the ASCO Cancer Prevention Committee for the work that they've done over the years to raise awareness, not only about cancer prevention to the public, but also within the oncology community. And ASCO's Cancer Prevention Committee has really spearheaded ASCO's work in tobacco control and cessation over the past 20 years, including supportive position statements on tobacco cessation and control, and also, for the electronic nicotine delivery device systems. And the committee continues to educate providers on the importance of addressing smoking cessation among their patients before and after a diagnosis of cancer.
Also, within the area of obesity and energy balance, the committee has issued a position statement, because, actually, the majority of Americans are not aware of the impact that obesity has on cancer risk and cancer prognosis, and just raising the awareness of that issue, particularly around underserved populations, is important, because those are the populations that actually have some of the higher rates, but also lack that knowledge. And so the committee has conducted surveys of not just oncologists, but also patients, to try to really understand how that information is being disseminated, and then what are the barriers to be able to address the issue of obesity? And so that's important work that's going on.
And a few years ago, the Prevention Committee also issued a statement on the association between alcohol and cancer risk and outcomes, and that's kind of all still a risk factor that has very little public awareness of its importance, and that's really driven a lot of the media and other publications that have come out really showing that association. And so raising that awareness is important. And the good news is that there are strategies and interventions and policy changes that can be brought to bear to impact some of these modifiable risk factors. And so that's a very exciting avenue for research and practical applications.
RAMY SEDHOM: Thank you, Dr. Brewster. That's actually a wonderful shift toward policy and advocacy. And I, myself, participated on the Hill with ASCO. And Dr. Pierce, can you share with us or discuss some of the advocacy efforts from ASCO for our patients and lawmakers who can help in critical ways as it relates to the social determinants of health?
LORI PIERCE: Thanks for the question. It's a great question. Advocacy is so important. So important that we advocate for our patients, because they often can't advocate for themselves.
And we advocate to lawmakers, that's on a local level, on state level, and a national level, because it really can highlight to our lawmakers some of the barriers that our patients face and things that they can do to remove those barriers. And I'll give you a great example, HR 913, the Clinical Treatment Act. For those of you who don't know what that is, it's the following.
Medicaid is the only insurer that does not cover routine care costs for patients, Medicaid patients who go on clinical trials. They're the only insurer that doesn't do that. And you talk about routine costs, we're talking about doctor visits, we're talking about x-ray tests, routine blood tests. The irony is Medicaid will cover these same costs if patients were not on a clinical trial, but they won't cover it on a clinical trial.
And of course, we know there are a lot of minority patients that are on Medicaid. And so this is the disincentive for minority patients to go on clinical trials, which is exactly what we do not want to see. And so ASCO has been spending quite a bit of time advocating to the legislation about how important it is to cover these costs in clinical trials.
And so the House has legislation, and just last week, the Senate now has parallel legislation. So we are moving the needle. We are going in the right direction. And it's a very important example of just what advocacy can do in terms of improving care for our patients.
RAMY SEDHOM: That's great to hear, and we hope things continue to move forward. Dr. Pierce, also would like to direct this question to you. What is your vision for the future of this podcast series? And what do we really want our listeners to take home from this?
LORI PIERCE: So I'm so excited about this series, and I am so appreciative to everyone, those who are on the series, and everyone in the background for getting this going. It's my hope that the series of broadcasts will be an important educational tool to really understanding the social determinants of health and how they impact our patients and society at large. And so this series will contain a lot of aspects, a lot of podcasts and videos on social determinants of health that our task force, which you are a key member of, is helping us to design. So our task force is made up of fellows and junior faculty, the future leaders of ASCO, and the future leaders of oncology in general. So thanks to your enthusiasm, thanks to your feedback, we are launching this, and I am super, super excited.
RAMY SEDHOM: Thank you, again, everybody. The conversations today are really a reminder of all of our shared experiences. I remember as an oncology fellow, oftentimes, the hardest part of care in the clinic was not the science or the biology of cancer, but actually, all of the things discussed today, especially the social determinants and how they impact our patients.
Again, we want to thank all of our wonderful faculty for serving as change agents. The planning of this podcast series is a joint effort through all of the wonderful ASCO volunteers who are fellows, junior faculty, ASCO leadership, and importantly, cancer survivors and ASCO staff. We do want everyone to look forward to next month's episode, where we will discuss and look at what ASCO can do as a professional society to address equity as a part of its mission.
Again, thank you to all of our listeners, both locally and abroad, for joining us for this episode of the ASCO podcast series on the social determinants of health. To keep up with the latest episodes, please be sure to subscribe. Let us know what you think about this series by leaving a review or by emailing us at [email protected]. Again, thank you, and we look forward to seeing you in the next episode.
ANNOUNCER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive eLearning Center at elearning.asco.org. -
This episode was originally released December 9, 2020
In this episode of ASCO eLearning's Social Determinants of Health (SDOH) series, Narjust Duma, MD, moderates a discussion with ASCO CEO, Clifford A. Hudis, MD, FACP, FASCO and Sybil R. Green, JD, RPh, MHA, Director of Strategic Initiatives in ASCO’s Policy and Advocacy Department, on what ASCO is doing as a professional society to address equity as part of its mission.
TRANSCRIPT
PRESENTER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
NARJUST DUMA: Welcome, everybody, to the second episode of ASCO's Social Determinants of Health series. My name is Dr. Narjust Duma. I am an assistant professor at the University of Wisconsin and also a thoracic oncologist. Today I'm joined by ASCO's CEO, Dr. Cliff Hudis, and Sybil Green, Director of Strategic Initiatives in the policy and advocacy department for ASCO.
This series is a new initiative proposed by ASCO president, Dr. Lori Pierce. It focuses on increasing oncologists' awareness about the social determinants of health through the cancer care and how impacts our patients' outcome, including modifiable risk factors. This series is inspired by Dr. Pierce's presidential team of equity, every day, every patient, everywhere. In this episode, we look at what ASCO is doing as a professional society to improve health equity and cancer care.Welcome, Dr. Hudis. Welcome, Mrs. Green. First I would like to us what is ASCO doing as an organization in the matter of health equity and cancer care?
CLIFF HUDIS: So I guess I'll start here. Thank you very much for spending some time with us on this. If you look at ASCO's mission, it is conquering cancer through research, education, and the promotion of the highest quality and equitable cancer care. So the idea of equity and our responsibility to address disparities is really in our organizational DNA.
I have to point out something that many people may not realize. But when ASCO was founded in 1964, one of the seven founders was a black woman, Jane C. Wright. Dr. Wright died in February of 2013. But her father was among the first African-American graduates of the Harvard Medical School. His father was also a physician. And he was educated at what became Meharry. So I remind everybody of this as often as I can, to make the point that not only do we have an opportunity to advance equity and to deal with disparities in health care, but it's my perspective as a leader of ASCO that we have a special obligation and responsibility to do all of that.
So we can talk more about it. But I'll just introduce maybe the answer by saying there are really two broad themes at work for us at ASCO. One is externally facing. And one is internally facing. The externally-facing work includes a range of projects and output that we can talk about a little more, but for example our position papers describing disparities and then identifying potential steps to take to address and solve them. But it also includes support for targeted research that is meant to narrow those gaps. It includes our educational efforts, both for our members and for legislators, advocacy for policy, and so on.
And then on the internal side-- and here I'll ask Sybil to talk a little bit-- I think we've recently recognized our opportunity, and again responsibility, to think about the workplace itself and to think about our staff and to think about the activities and actions we can take and the roles we can model to create a better world. So I know I've been high level in my initial answer here. But the two domains again are external and internal. And then we can talk about some of the specific projects as we go on.
NARJUST DUMA: Mrs. Green, I think it's very important to share about these internal aspects of ASCO because many of us are now aware as members, we see the surface. But ASCO is a large organization with many staff and members. So it would be great that you can share that with us.
SYBIL GREEN: Absolutely. And thank you for allowing us to share that. I think Dr. Hudis pointed out some of what we've done since ASCO's establishments and really charging everyone on staff to really live out that obligation of equity, diversity, and inclusion. And so through our programs, our staff have to do their work, make sure that we are creating equitable opportunities for patients and physicians, but it starts at home.
And so we have to make sure that internally, we are offering those same opportunities for our staff to engage because what we know is that when staff are engaged, and they have the opportunity to bring their true selves to work every day, they bring their personalities. They bring their lived experiences. And that all plays out in the work that we're doing on behalf of members, in their patients, but also for staff.
I think if I were sum up where our program is going, similar to what Dr. Hudis has done, the three components are really enabling staff success. We ought to be able to do that for our staff internally. Every day we ought to provide opportunities for them to succeed. And then making sure that our partnerships-- those that we work with, whether it's in our publications, our meetings-- making sure that our partners goals and ideals align with ASCO's values and ideals. And all of this, of course, is in support of the greater ASCO enterprise, which is our members and the patients and of course, ASCO staff.
NARJUST DUMA: And I think that it's really important-- I had the pleasure of interacting with several staff members with diverse backgrounds. And I think as we develop the mentorship program and other things, their input is diverse. It means we also are able to cover the trainees needs because every trainee's needs are different. And because I cannot give a talk or do a podcast without mentioning my grandma, [INAUDIBLE], I have to say that it's important to clean your house first before you go and try to clean other people's houses. I do promise it's beautiful in a Spanish. But I think it's important that everybody knows that internally ASCO is doing a lot of work.
And I think it's important to talk about the grants in health equity. And I'm mentioning this because I haven't been doing health equity since I was a med student. And sometimes you find yourself not having enough grant opportunities. Now there is an increase. But when you compare it to other areas of oncology, you may be more competitive because there are less grants. And I think it would be great to hear from the both of you about the new health equity grants, the breast cancer disparity grant, and beyond.
CLIFF HUDIS: Well I would just point out something to build on your comment, first of all. Since we were founded in 1964 til now-- so just over 55 years-- we've made unbelievable advances, I think, in oncology in general. Indeed the reason I as an old man chose to go into an oncology in the 1970s was that the vision ahead was that this was going to be an exciting field. And it has not disappointed.
However there's a dark that I think we should acknowledge. The advances have not been fairly or evenly distributed. And indeed in some cases when we make massive improvements in outcomes in terms of what's possible with state-of-the-art care, we increase disparities because not every group catches up. And I say all that because it's important to understand that this is not about abstraction. These grants that address that gap are as or more important than the basic science grants that actually advance the biology and understanding in the first place. One without the other is incomplete.
So I can't agree more that this is important. And actually from an investment or return on investment point of view, in some ways, these grants are an even better deal because we can rest many of these gaps in care delivery and in knowledge pretty quickly and narrow the gap. And we've seen it. I'm going to give you some examples in a moment. Whereas funding basic science, honestly, is a much higher risk proposition, if you think about it. So I don't mean to set up a false competition here. But I want to point out that there's a big reward.
So here's an example. The plenary session abstract at ASCO two years ago now-- abstract number one, if you recall, was no moral less than an analysis of the impact of Medicaid expansion. And what did it show? It showed that with Medicaid expansion, those states that implemented it quickly narrowed the gap in time to initiation of therapy for curable colon cancer. It's a simple take-home point. I care passionately about this personally because these are differences in outcome that have been labeled as associated with race for many years or other specific ethnic facts. But really what they're about is nothing except unfair, uneven access to care in the first place on the basis of race. And it's something that we can address.
So we are building out programs to address this through a number of granting mechanisms. For 2020 alone, there are going to be two Young investigator awards that are earmarked for underrepresented populations. And there's a career development award and another YIA, Young Investigator Award, in health disparities specifically. But this is just, I think, part of the issue.
The other issue for us-- and actually a commitment going back for years-- is to do something about the workforce itself. And I don't have to tell you, but of course, there is a huge disparity playing out when we look at makeup of medical students in America. And it gets accentuated to the extreme when we look at black men. They are the most disproportionately underrepresented group right now.
So how are we going to address that? And we're really proud this year to be launching a program that is aimed at newly-matriculating medical students building on a successful program in Boston that's been running for a couple of years already with Bob Mayer is the founder. And our goal is to the interest of specifically targeted populations, not just in medicine but specifically in oncology.
NARJUST DUMA: Mrs. Green, you would like to add something about the grant and what is happening to support health disparities various research at ASCO?
SYBIL GREEN: I'll just add the importance of any grant opportunity in any program being one to two. So it's one thing to be able to address bringing in the right medical students to be able to mirror the populations that they serve. It's something else to continue to support them along the way, and so not just stopping at the students, not just stopping at the research, but also making sure that was they're in practice they're supported.
And a couple of grants that we've had for some time focus on quality, not just in ensuring that quality services are delivered, but actually helping practices to determine how to identify gaps in [INAUDIBLE] populations that are underserved because we may not be able to identify those same gaps that we would identify in majority populations. And so by giving them the tools to some of the other programs that ASCO has to be able to identify those gaps and then to support them along the way is really important.
NARJUST DUMA: And I want to add to what Dr. Hudis mentioned about workforce diversity because this is one of my areas of research and passion. And it's extremely important to have a diverse workforce to represent the patients we're caring for. It's not only having a diverse workforce, but having a workforce that practices cultural humility. We cannot assume that we are proficient or we are competent in somebody's culture.
I'm a Latina. And there are so many Latinos in so many different backgrounds that I cannot learn them all. And I think it's important that early interventions are-- because when you get exposed to a specialty early on during the training, that would change your pathway. I'm the daughter of two surgeons. I'm supposed to be a plastic surgeon. But a patient with cancer changed my life and my pathway. So we're able to support those students that have less resources and less access-- and that also includes rural students-- they may don't be black or Latino, they may be white, but they come from rural areas with limited resources-- we are sure that we meet the patient needs because there are aspects I don't understand.
Like I'm in Wisconsin, and there are some aspects to farming I didn't know. Now I know when harvest is. And all of that allows us to plan appropriately. So I can see how important it is. And there's a task force that is run by Dr. Winfield, which I'm lucky to be part, that focuses on the workforce diversity.
Along those lines, as a minority in medicine, I have seen up and downs of the interest in workforce diversity and health equity. I think many events in 2020 helped a lot of people open their eyes or be more conscious like, oh, that's not isolated. That happens in my back yard. It happened in Kenosha, Wisconsin. But we want to hear how is ASCO making these things long term, how the internal and external changes are going to be long term? And I will start with Mrs. Green and then go to Dr. Hudis.
SYBIL GREEN: So in terms of making it long term, it can't be one and done. I think quite often when we focus on equity and diversity issues, we always look at diversity first. And so whether it's workforce or whether it's increasing opportunities for access, you can't just look at the numbers. You have to also think a little bit deeper. You have to think about culture. And so culture with humility, like you mentioned, Dr. Duma, is important, but making sure that attitudes are changing along the way.
And that happens through self-awareness. That happens through understanding. And I think that ASCO plays a real role in making sure that our members understand what the issues are and how to dig past those things and provide them with the tools to be able to [INAUDIBLE]. ASCO I think, is not unique. And the idea that this is all new to us has gotten a lot of attention because of some of the social and racial injustice. But what that means is that our members now are probably more interested in ensuring equity than ever before.
But we have to teach them how to do it. We have to teach them how to speak the language. We have to teach them how to be more aware, both in their own organizations, at ASCO internally, and for their patients. And so it's a cultural change. It's not going to happen overnight. It's gradual understanding of the dynamics, gradual understanding of different peoples goals, and meeting them where they are, so that we can help them to move along, so that we can come to a more equitable and just [INAUDIBLE].
CLIFF HUDIS: I think one of the things Sybil and I spoke about this summer is we launched our internal EDI effort-- relates to this. And that is this is not about identifying a leaky pipe and patching it and saying, well, we're done now. This is actually, in my view, a permanent change in the way we see work and the way we see our growth. So the goal is to reach a specific landmark. The goal is to change how we think about our work and how we think about our role in the world, so that we're constantly improving.
And it's a journey, not a destination, I think, which sounds trite. But that's the spirit of it. And it gets to your question about how we make sure that the commitment is continuous and not just while it's [INAUDIBLE] and exciting. And I think we are committed and dedicated to that.
I do want to present a related challenge because it's something you said really sparked this thought for me. As a physician, when did you know that you wanted to be a physician? How old were you?
NARJUST DUMA: I was 5.
CLIFF HUDIS: And, Sybil, when did you know what your career path was going to be?
SYBIL GREEN: I was 9.
CLIFF HUDIS: That doesn't support my thesis [LAUGHS] [INAUDIBLE]. So here's the issue. The issue of burnout in medicine right now is getting a lot of attention. And one of the reasons for it, frequently given, is that doctors on average decide to commit to their careers a decade younger than most people on average commit to other careers. You're an exception, Sybil, so I should have pretested the question.
But the issue is we're not here to talk about burnout today, even though that's really important. The issue is this. In order to ultimately address the makeup of the population of physicians, we need to reach deeper and further into precollege communities. And we need to show people that they could have lives in science and health care and in medicine and maybe specifically oncology.
And I'm just pointing out to you that that's a daunting challenge for a professional society like ASCO. That's not our audience. We don't have a natural connection there. And one of the things that we're working on right now is identifying programs that have worked, that exposed high school students from previously excluded populations or communities to medicine, so that we can spark that passion before college, not during college, and therefore have the commitment that it takes to go far into medicine.
And I'll just close by saying something that you hinted at but needs to be said. The reason to have diversity in our workforce is not that an Asian patient needs an Asian doctor. It's that an Asian patient needs a practice that has Asian doctors in it, so that the practice as a whole is able to be culturally sensitive and able to relate and communicate and support them because I think sometimes this issue gets oversimplified as well.
SYBIL GREEN: So Dr. Hudis, your theory is not completely [INAUDIBLE] I think it's relevant to this conversation because while I knew what I wanted to do at 9, what I didn't have was the representatives in the community. I didn't have the mentor. Interestingly enough, I had more mentors in pharmacy than I had in law because I saw pharmacists who looked like me. I happened to live in a town where there was a historically black college with [INAUDIBLE]. And so I saw people look like me. And it made it a lot easier for me to reach out to them, for them to mentor me, for them to start talking to me about what equity in health care looked like. That really wasn't until I was in college.
But the truth of the matter is for most diverse students, most minority students, that doesn't exist. And I think that that's where ASCO's mentoring programs are really rich. You have the opportunity to do that.
NARJUST DUMA: And I think this is important because you can do what you can see. And that has been proven over and over again. We unfortunately are running out of time. But I want to ask the final question. Like a manuscript, like a study, everything has limitations. And I think it's important that we talk about the limitations of ASCO doing this work because realistic expectations are helpful so we don't get disappointed when we have big expectations that may not be met. So Dr. Hudis, what are some of the limitations of ASCO to help equity work now?
CLIFF HUDIS: You're right, it's a huge issue. If you think about where our scientific focus is, we can measure the disparities or the difference in outcomes. And we can write a paper about that but when you really get to addressing the reasons for it, it extends far beyond what we can do. So I guess our limit is we can call attention and rally colleagues and collaborate across the House of Medicine and broadly into Congress, where we can make a difference-- or to the United Nations and World Health Organization. But we can't do this heavy lift alone. We need other colleagues who agree who are willing to invest time and money to make the change.
SYBIL GREEN: And I would add partnerships because as much as we're talking about social determinants of health, we recognize that all social determinants of health are not health related. They're not [INAUDIBLE]. And many of them live and operate outside of the realm of health care. But what we can do is bring our expertise to the table about the impact of those things, so that our partners stand in their own world, in education, in criminal justice, in financial assistance, how that can help really change the outcomes for patients. I think at ASCO, we've got that expertise. And we can do that.
NARJUST DUMA: Thank both of you for your time. Thank you, everybody, for joining us for the second episode of ASCO Social Determinants of Health series. Please keep up with us. You can subscribe. You can see this on Facebook, YouTube-- when it becomes available. We'll continue to explore the social determinants of health and cancer care. You can leave feedback or emails, any questions to the professional development, at asco.org. And I thank you for your time. And have a wonderful week.
PRESENTER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive eLearning center at elearning.asco.org.
