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Welp, it's a wrap folks! Welcome to the last episode of Season 2 of asPERusual and onePERspective. In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR CHILD-BRIGHT. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full SPOR CHILD-Bright episode and learn more about engaging children, youth, and families in research.
Episode Transcript:
Hi everyone! Welcome back to onePERspective, a tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podcast for practical patient engagement. My name is Anna Chudyk, and I am asPERusual’s host. This is officially the last episode of season 2 of asPERusual, and onePERspective, by association. But have no fear, I’m already booking tapings for next season, so we definitely do plan to be back sometime in the fall again.
On this episode of onePERspective, Kathy is recapping our previous episode that featured Carrie Costello, Annette Majnemer and Gillian Backlin from the Strategy for Patient-Oriented Research (or SPOR for Short) CHILD-BRIGHT Network. The network is funded by the Canadian Institutes of Health Research – Canada’s national health research funder – with the aim of making the future brighter for children with brain-based developmental disabilities and their families through patient engagement (also referred to as patient and public involvement) and patient-oriented research. If you’re unfamiliar with the concepts, patient engagement actively and meaningfully involves patients and caregivers as members of research teams, while patient-oriented research incorporates patient engagement into research that focuses on patient-identified priorities and outcomes. Now that we’re all hopefully on the same page, I’ll hand it over to you Kathy for your onePERspective!
Kathy Smith:
All of the patient engagement entities funded by Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) have given us insightful and unique models for patient and public involvement. CHILD-BRIGHT is a national network made up of a team 15 funders, 500 researchers, as well as clinicians, policy-makers, parents. What stands out though is the inclusion of young partners with lived, or living, experience (PWLEs). CHILD-BRIGHT authentically integrates children as active team members in all research projects and advisory activities. They are all focused on making brighter futures for children and youth with brain-based developmental disabilities. Hearing Carrie, Annette and Gillian describe the depth and breadth of engagement of their youth sector was something new that piqued my interest. “Nothing abut me without me” is really in play. We listeners learned about special considerations related to authentically engaging younger people and their families. We were given how-to methods we could now incorporate within our own engagement communities. As well, Carrie, Annette and Gillian provided examples of where the PWLE voices powered moving research into improved practice and policies for all children living with brain-based developmental challenges.
For proof of concept, Id like to share a couple of my own personal affirmations of the power of the voices of children with lived experience can contribute. At our regional hospital, a very young child had endured repeated surgeries. Finally, he asked if he could be taken into surgery in a wagon, instead of the big scary gurney. Now, all children at our regional hospital enjoy that wagon ride into surgery. A child engineered this patient-centric improvement in care! A powerful example of “for patients by patients” done by a young PWLE! I’ll share a more personal example convincing me of the power of youth voices sharing their lived experiences to improve patient care. Bloodwork is frequent when you are undergoing chemotherapy. Veins are exquisitely tenders making the draws quite painful. A 7-year old lad in an adjoining cubicle was to receive his bloodwork. He had his arms folded. He refused to unfold them because he saw the technician was not going to use the special equipment for sensitive veins. He stood firm repeating; “I will not unfold my arms until you bring in the “butterfly” – a much smaller, gentler apparatus for blood draws. Asserting his lived experience knowledge and insisting on more responsive patient-centric care, he helped me dealing with my own sore veins and dread of the draw. I asked for, and got, the butterfly too! And that made all the difference. I was so impressed by, and eternally grateful for, that young lad for voicing his concerns and correcting a gap in patient care.
CHILD BRIGHT examines many gaps in (1) early identification; (2) innovative technologies and (3) rehabilitation with input from the entire team. Parents like Carrie, and patients like Gillian, are co-investigators on research projects surrounding their three themes that were developed in partnership with parents and youth: projects that optimize developmental outcomes; projects that integrate mental health support into care for patients and their families; and projects that redesign health care services to be more responsive to family needs.
Now entering CHILD-BRIGHT’s second phase, the focus will shift to implementing the knowledge gleaned during the past six years in Phase One. I’d like to learn more about their individualized knowledge translation hubs targeted either for clinicians, for parents, or for policymakers always ensuring the concepts equity, diversity, inclusion, decolonization and Indigenisation are integrated into the hubs and in all the research activities they undertake.
As for patient involvement, Carrie describes her role as the “connector” between the Steering Committee, the other Patient Liaisons and the public at large. Similarly, I’ve referred to my PPI (Patient and Public Involvement) role as that of a bi-directional “honey bee”. Happy to see how their use of an expert to help them deliberately recruit new members thru targeted social media sites really paid off. And using their “matching tool” then fits the right Patient Liaison to the right project based on the specific information PWLE’s are asked to supply in their onsite application.
Gillian describes her role on the Youth Advocacy Council as that of a consultant – or collaborator - providing the voice lived experience on all committees and working groups or advising researchers. Really great to hear Gillian tell us how much her Youth group has grown and how they now have incorporated Liaison Partners from 13 First Nation groups.
CHILD-BRIGHT’s uniqueness centres on in its focus on youth and the extent of its inclusion of youths with lived experience in all aspects of engagement in research. And CHILD-BRIGHT shares the common struggles of other patient engagement in research (PER) entities surrounding recognition, remuneration and evaluation of success. It is likely even more challenging dealing with special issues working with youth as well as working with adults. Their heart is in the right place. They are united in purpose and their focus is on an underserved group: children and youth with brain-based developmental disabilities. I am grateful this podcast enlightened me about CHILD-BRIGHT. Thank you Anna, Annette, Carrie and Gillian!
PERsonally Speaking
1, Really appreciated learning about a patient engagement group of children and youth and their families. Really impressed at the depth and breadth of youth participation – even as co-authors of research!
2. Again, we encounter the common theme of the importance of authentic bi-directional relationship building and the patience of time and whole lota money needed to build a successful and meaningful collaboration between patients and practitioners and policymakers.
3. And again we see a PER group still working out the fine details surrounding recognition, remuneration and evaluation of engagement.
Points to Ponder
Final words to close out season 2. Each specific engagement entity will always have their own special priorities to deal with in their own special way, But all sites have common features of PER that I hope we can amalgamate into one, standard pan-Canadian PER agency. This common entity would have a repository matching a researcher request with best-fit, vetted PWLEs. And it would include dedicated PER Navigators to handle the administrative tasks for both the PWLE’s and the researchers.
Wishing you all a happy, safe and healthy, fun-filled summer!
Anna:
Thanks so much Kathy. I can’t thank you enough for all of the time and energy you have poured into onePERspective and the wonderful insights that you have brought to all of us. Thank you to all of our listeners; to those of you who have helped spread the word about the podcast and sent me supportive emails; to our guests who have shared their time, experiences, and wisdom; to Bryn Robinson and Roger Stoddard who were my original cohosts and helped make this podcast a reality; and to Bre Kelly and Sasha Kullman who have been huge helps behind the scenes. Lastly I would also like to thank my mentor Annette Schultz and the CIHR POR Awards - Transition to Leadership Stream Phase 1 and 2 awards for their support in helping me establish my patient-oriented research program, which led to this podcast.
I hope you all have a great summer and I look forward to coming back with Season 3 sometime in the fall. If you haven’t done so already, I encourage you to subscribe to our podcast’s newsletter by visiting asperusual.substack.com so that you are kept up to date with podcast updates, or to add me to LinkedIn or X by searching Anna M. Chudyk on your web browser as I also post notifications there. If you have any ideas on how we can make asPERusual even better next season, be sure to send me an email at [email protected]. Big hugs to you all and until next time, let's keep working together to make patient engagement in research the standard or As PER Usual.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
Overview
In this episode of asPERusual, host Anna Chudyk sits down with Carrie Costello, Annette Majnemer and Gillian Backlin from the CHILD-BRIGHT Network. Our discussion includes:
* An overview of CHILD-BRIGHT, including its key activities and ways to get involved;
* Different ways in which CHILD-BRIGHT is actively seeking to increase diversity within their network;
* Practical considerations for engaging with youth and families in research - from initiating relationships to evaluating engagement work.
* Tips for fostering authenticity, respect, and reciprocity, and creating environments where engagement can thrive.
The CHILD-BRIGHT Network is a pan-Canadian patient-oriented research network based at the Research Institute of the McGill University Health Centre. Created in 2016, it works to create brighter futures for children and youth with brain-based developmental disabilities and their families. Funded by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) and 15 funding partners across the country, this national network includes 500 researchers, clinicians, decision-makers, youth, and parents.
Meet our guests
Carrie Costello is the Implementation Support Coordinator for The Center for Implementation. She is a graduate of the University of Victoria BFA program and came into research after her middle child was diagnosed early in life with a profound intellectual disability and a seizure disorder. She has been a parent partner in research on over 15 projects and is the primary co-investigator on two of these research studies. She specializes in facilitating conversations with children and youth. Carrie is the parent liaison for the CHILD-BRIGHT Network and previously was the Patient Engagement Coordinator at the Children's Hospital Research Institute of Manitoba. In 2023, she won the Frank Gavin Patient Engagement Leadership Award and the Made With Patients Rising Star award for her work. Carrie is also an award-winning playwright for young audiences and an avid puppeteer
Annette Majnemer, OT, PhD, FCAHS is an occupational therapist with doctoral training in the neurosciences. She is Professor at the School of Physical & Occupational Therapy, a Senior Scientist at the Research Institute - McGill University Health Centre (Montreal Children’s Hospital), and a member of Montreal’s Centre for Interdisciplinary Research in Rehabilitation. She is the nominated principal investigator of CHILD-BRIGHT, a CIHR SPOR Network with patient-oriented research focused on children with brain-based disabilities and their families. CHILD-BRIGHT’s mission is to foster a movement for change: moving patients into research teams, moving research into improved practice and policy, and moving children and families forward towards brighter futures.
Gillian Backlin is a member of the CHILD-BRIGHT Network’s National Youth Advocate Council and serves on other panels and committees within CHILD-BRIGHT, where she uses her skills and draws from lived experience to contribute. Gillian has completed the technical writing certificate at the British Columbia Institute of Technology and currently works as a research assistant while pursuing her bachelor's degree in public health. She also manages an online platform called Spastic & Fantastic to share her life and raise awareness about the stigmas associated with labels, such as “disabled.” In her free time, she enjoys spending time with friends, family, and her dog.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
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In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on Patient Advisor Network's Reimagining the Research Landscape report. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Reimagining the Research Landscape episode.
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith recaps the previous week’s episode of asPERusual – a podcast for practical patient engagement. Today’s episode of onePERspective is special for two reasons.
For starters it marks the first time that Kathy and I have actually seen each other in-person. Although we’ve worked together for over two years in varying capacities, we hadn’t met each other until a few days ago, when Kathy came into town to help co-lead data collection for a participatory design study we are both a part of. As we met I couldn’t help but think of what Alies, our previous episode’s guest had said when she appeared on Season 1 Episode 8 of asPERusual. That is, how funny it is to know someone for a long time as a floating head and then to finally meet them in person with a whole body attached. I’m so glad we finally got a chance to hang out in-person Kathy and I hope the opportunities to do so keep coming. And for anyone who is interested, check out our free newsletter or website (asperusual.substack.com) for a photo from our meeting.
Another reason this episode is special is that it focuses on a detour from our regular season 2 programming. That is, the episode focused on a patient-led report from our friends at the Patient Advisors Network, instead of a Strategy for Patient-Oriented Research funded entity. Although I do love patterns and neat boxes, I felt that this deviation was very important given the novelty and findings of this Reimagining the Research Landscape Report, highlights of which I’m sure Kathy will cover next.
Alright so before I turn it over to Kathy, there are some acronyms and contextual points I will quickly cover to ensure that all of our listeners out there are able to follow along:
The Canadian Institutes of Health Research (or CIHR for short) is Canada’s national funder of health research.
In approximately 2010, CIHR established the Strategy for Patient-Oriented Research (or SPOR for short) to champion and support research that focuses on patient-identified priorities and outcomes and involves meaningful and active collaborations between patients, care partners and researchers (the latter of which is referred to as patient engagement in research). SPOR is recently undergoing a revamping, which they have called the SPOR Refresh, which involves among other things, consultations with the patient-oriented research community.
The Patient Advisors Network (or PAN for short) is an independent, non-profit pan-Canadian organization comprised of patients and care partners that was asked by SPOR to carry out their own consultation activities to help inform the SPOR refresh.
Ok so I hope that was more helpful than confusing, and I do encourage everyone out there to listen to last week’s episode or check out our website (asperusual.substack.com) for today’s interactive transcript that will help make things even more clear. And with that, over to you Kathy for your onePERsective!
Kathy Smith:
Thanks, Anna. It was really a pleasure to finally meet you in person, and I'm looking forward to many more partnerships as we move forward!
This is a unique SPOR initiative that we're looking at today. The pan-Canadian Patient Advisors Network (PAN) was tasked to survey patients engaged in research experiences right across Canada. Alies Maybee and Donna Rubenstein, along with a patient steering committee, created and produced an innovative and precedent setting experience survey to inform decision makers of POR experiences. A whopping 262 patients engaged or wanting to become engaged in research responded.
What set this survey apart from the many existing surveys is that the questions were asked and supplied solely by patients for patients. As Donna explained, “the questions we asked were not the cookie cutter, usual survey questions. We asked questions harvested from the perspectives of what patients identified themselves as important to understand.” As a result, they captured new data, opening the door to better understanding the patient perspectives engaging as a partner in research.
Some examples of questions included:
When you contributed, did you feel your voice was heard?
Was your input valued and acted upon?
Did you feel comfortable asking questions?
Did you experience covert or unconscious bias for not being an academic?
Did you feel you were making an impact or made an impact?
Was your role integral, significant, or tokenistic?
The answers did not surprise me. Overwhelmingly, a huge number of the 262 respondents felt that they were discriminated and disrespected because they were not academics. They did not feel their voices were heard as equals. The traditional research landscape does not presently equally value the voices of all its contributors. But in my experience, I believe they are fully on board to transforming that ecosystem by learning from us. I commend Alice and Donna and their team for capturing data to help shift this paradigm.
Another strong survey finding that will come as no surprise, but is now supported with strong evidence, is that the research community is a closed shop that is not great at communicating with the public community. We need to change the research community's SOP, or standard operating policies and procedures, in order to change the research landscape.
I really like the way Alies organized the findings at three levels of research environment to consider for changing:
At the micro level, the research team most closely aligned with the patients engaged in research.
At the meso level, administrators at universities and other research institutes. They are removed from the action, but are tasked by the research funder to manage the research grants. This is a major stumbling block and a bottleneck for researchers who want to and do engage patients in research — the time consuming, complicated, creeping barrage of administrative bureaucracy.
At the macro level, the major research funders like the Canadian Institute for Health Research are next level removed from understanding and championing POR. Yet they are the ones who set out the research grant requirements, the timelines for deliverables, and the criteria for who should and who should not be funded.
There are many other interesting and innovative suggestions for this transformation in the research ecosystem that can be found in the Patient Advisor Networks’ pan-Canadian Patients Engaged in Research survey. If you'd like to check it out for yourself, the name of the report is Reimagining the Research Landscape.
Personally speaking:
The patience of time needed to build meaningful and respectful relationships is the cornerstone to successful patient engagement in research. Funders need to acknowledge its importance and to fund this fundamental first step.
We must flatten the power dynamics between the patients and researchers by meeting people where they are at. Bring your authentic whole self to the table. Listen attentively and be open minded. We are all more than just our health condition.
Nothing about me without me is the ticket for patients to rightfully participate in patient centered research.
Anna:
Thanks so much Kathy. One of the many things that I also enjoyed about Donna and Alies’ episode was what I affectionately term “bonus content.” These were additional insights into important topics that flowed out of our conversations, such as
expected and unexpected benefits of patient-led research;
tips for how to support patient partners in bringing diverse perspectives to engagement opportunities through the establishment of patient advisory councils comprised of large numbers of patient partners. This is an idea I’ve been looking to incorporate into my own research program and it was great to hear more about it in action.
Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you’re there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at [email protected]. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
Overview
In this episode of asPERusual, host Anna Chudyk sits down with Alies Maybee and Donna Rubenstein from the Patient Advisors Network to discuss the recently published Reimagining the Research Landscape Report. This patient led-report examined ~200 patient partners’ perspectives on the future of patient-oriented research in Canada. Tune in to learn about the three main take-aways from the report, including:
Changing the research landscape: What needs to occur at micro, meso, and macro levels to promote and support patient engagement in research;
Growing the patient/caregiver partner community: Targeted and intentional outreach to open doors to research for future patient partners;
Changing academic culture: To promote respect and prevent the tokenistic engagement of patient partners.
Bonus content includes:
expected and unexpected benefits of patient-led research;
tips for establishing patient advisory councils to support in-depth engagement;
next steps for fostering respect and reducing discrimination within research teams and;
other tangible applications of the Reimagining the Research Landscape Report.
Meet our guests
Donna Rubenstein: is committed to demonstrating the transformative value of the patient and community voice through partnerships in all aspects of healthcare. Her views are shaped by personal experience as a patient and caregiver as well as a career working internationally bridging cross cultural differences in business practices. PAN and the people she met through the network inspired her patient partner journey –helping her see new and bigger possibilities. She wants others to have the same experience.
Current activities include projects at the provincial and national level. These include the Patient Public Partner Council for the Maritime SPOR Support Unit, Nova Scotia Health Patient Family Advisor Building Connections Committee, Nova Scotia Health Virtual Innovation projects and primary care research related to interdisciplinary models of care.
Alies Maybee: brings her patient/caregiver background to her commitment to improve many aspects of healthcare. She has on the ground experience as a patient partner on over eight research projects since 2014 and has taken the PaCER, University of Alberta course training patients and caregivers to be community researchers.
In the research management and governance area, Alies was one of the initial citizen members of the Research Management Committee of the Canadian Frailty Network for nearly 4 years evaluating research applications. She has also been on the ARTIC Operational Committee focusing on scale and spread of proven interventions and the INSPIRE-Primary Health Care Operations Committee focusing on access to care, the care experience for patients and better health outcomes. She was on the National Patient Council and the National Leadership Council for the Primary and Integrated Health Care Innovations Network. She is a member of the Policy Engagement Committee for Research Canada.
And finally, she is one of 12 co-founders and current co-chair of the Patient Advisors Network (PAN), a national community of practice for patient/caregiver partners. PAN is a fully independent organization of patient/caregiver partners in Canada and as such, is unique.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR Canadian Data Platform. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full SPOR Canadian Data Platform episode.
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podcast for practical patient engagement. Today, Kathy will be recapping our episode that featured Catherine Street, Frank Gavin, and Kim McGrail from the Strategy for Patient-Oriented Research (or SPOR for Short) Canadian Data Platform. The platform is funded by the Canadian Institutes of Health Research – Canada’s national health research funder – with the aim of helping to create a multi-jurisdictional data access support system. Importantly, the SPOR Canadian Data Platform also does a lot of impressive work to engage Canadians in conversation about their health data, including how its collected, used, and applied to better health outcomes and create a more equitable healthcare system. So without further ado, take it away Kathy with your onePERspective.
Kathy Smith:
Thank you for that, Anna. In the previous six episodes, we have been introduced to patient facing engagement platforms funded by SPOR. This time, however, it's a little different. Catherine Street, Kim McGrail, and Frank Gavin share a clinician scientist facing SPOR platform, the Canadian Data Platform, or the SPOR-DP for short. Dr. Catherine Street described SPOR-DP's main function as to bring together multi-regional data for improvement, innovation and evaluation essential to a learning health system.
How does data collection intersect with patient collaboration? Frank showed us how patients do play a large role in helping shape the data platform by supporting research that focuses on patient identified priorities. SPOR-DP has a public advisory council. It's a forum where the public and the professionals, the policymakers and the researchers and the scientists meet to discuss issues around data collection, data sharing, and data access. I think everyone will agree that the number one data issue is transparency and trust. The less transparent the data collection and sharing processes, the less trust the public has in its information.
Other data deliberations surround:
the security of collection and safe storage of the data,
the equity of access to the data,
the types of data collected or missed,
the privacy and ownership of the data,
who controls the use of the data, and
who can benefit from the health care data collected?
What we all want to know is how do the data collected impact the health of people and/or communities?
That's a tall ask of the patients and professionals on this program, but access to this pan-Canadian data repository can build a better understanding of priorities that are funding the research that moves science ahead and, as a result, better health care for all. I think that Frank zeroed in on one of our basic human instincts the why, the how, the when and the where. Curiosity. Curiosity is the driver of interest in data.
As a learning system, we all want to use data to make sure we are doing things that are helping address gaps, reduce errors and workloads, support underserved communities, and of course, do no harm. Like Frank, I too have experience with members of my family who face the inter versus intra provincial discrepancies in access to treatment and/or drugs. Perhaps pan-Canadian population studies with DP's repository hopefully will show policymakers the pressing need to reduce this error. No one should be denied access to treatment by virtue of geography or provincial boundaries. We do need a pan-Canadian management board to address this inequity. Yes, health care is a provincial jurisdiction. But once again, if the pandemic taught us anything, we go further, faster, better when we communicate and collaborate and share our findings as well as our resources. Sharing is caring.
The biggest takeaway for me from the SPOR Data Platform presentation is their laser focus on making data much more accessible to researchers and decision makers. Data is a powerful tool. The choice about how it gets deployed is ours because data drives decisions. A streamlined, simplified process for requesting comparable data from across the country will create new opportunities for researchers, says Dr. Kim McGrail, scientific director of the SPOR-DP.
Personally speaking:
If the pandemic taught us anything, it was that when we combine scientific and clinical with public expertise in a collaborative, interdisciplinary environment, we can move at warp speed to invent and apply new treatments and technologies. Can SPOR’s jurisdictional linkage of population level data, also known as Big data, be a game changer for health research and researchers?
SPOR combines a diversity of voices that span a variety of disciplines, geographies, cultures, and behavioral experiences with the scientific and clinical experts. This is a strong and powerful management strategy for the data platform.
I have heard it said you can have data without information, but you can't have information without data. Did we all watch the movie Moneyball, about the down and out Oakland A's baseball team? They took a chance on a statistician, Billy Bean, who collected and analyzed data on every player. At first, everyone laughed at that idea, but we all know the outcome — data management proved a powerful tool in sports. Can you think of any team that doesn't do that today? So we have a robust data management tool here in SPOR-DP and I'm glad we have a centralized data management system going on.
Anna:
Thanks so much Kathy. I always love listening to your key reflections and their applications to moving our health system forward. Something that I have been reflecting on since we shot and aired SPOR Data Platform’s episode is the importance of bringing patients and public into conversations about their health data, both to help direct, and address fears and uncertainties about, these directions moving forward. Nothing about us, without us, as you always say Kathy. And boy does this ring true here. The SPOR Data Platform definitely deserves to be commended for all of the patient and public outreach they embed into their activities.
Their work also makes me think of other great patient public outreach that we have going on in this space, like through the PXP – for patients, by patients – initiative led by my friend and asperusual season 1 guest Dawn Richards, which holds regular webinars that feature patients and the public talking about key issues related to patient engagement in research. It also makes me think of all of the great work that our friends at the Patients Advisors Network have been doing to help bring and support patients and the public into the patient engagement and healthcare advisor realms.
This actually brings me to our next episode, which will be airing on Monday, June 3. In it, the ever awesome Alies Maybe and Donna Rubenstein will be coming on to discuss the Patient Advisor Network’s recently released report titled, “Reimagining the Research Landscape.” The report is freely available if you go to patientadvisors.ca. I know that this episode is a bit of a sidestep from our season’s theme of focusing on SPOR-funded entities, but the report is affiliated with SPOR’s refresh activities and really brings to the forefront patient and public perspectives on the future of patient engagement and patient-oriented research in Canada. If this topic is of interest to you, then you should also consider reading a study that my colleagues and I recently published in BMC Health Research Policy and Systems titled, “Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers.” It’s free to read through the journal, so give it a Google.
Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you’re there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at [email protected]. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
Episode overview
In this episode of asPERusual, host Anna Chudyk sits down with representatives from the SPOR Canadian Data Platform to learn about the different ways the network is engaging Canadians in conversations about their health data. Key topics covered include:
* the ways in which multi-regional data access contributes to a learning health system,
* how health data can contribute to improvements in health and health equity,
* ways in which the network engages Canadians in conversation about what they think about health data and its use and the types of health data and outcomes that matter to them, and
* patient and public engagement in the network’s governance.
Guests Kim McGrail, Frank Gavin, and Catherine Street also discuss key issues that patients and the public have raised about their health data, which revolve around the themes of:
* trust, security, and safety;
* equity, fairness, and access;
* data availability and the types of data that are collected;
* the language used to talk about data, and;
* ownership — e.g., who owns health data? who controls how “their” health data are used?
As you’ll hear stated in episode, “Health data really is for all of us… so for those who are interested, there's ways to get involved. And those who are less interested can have some trust that there are people like them who are involved, and therefore they they can worry about other things that might be more of a priority and interest to them… we all have a responsibility to understand the data that we're using.” So what are you waiting for? Tune in and join the conversation about your health data!
Meet our guests
Catherine Street is the Director of the Newfoundland and Labrador SPOR SUPPORT Unit and the Executive Lead for Public Engagement with Health Data Research Network Canada. She has worked in Patient / Public Oriented Research since 2014, when she was appointed Director, NL SUPPORT at Memorial University, St John’s Newfoundland and Labrador .
Frank Gavin chaired the Public Advisory Council of the Health Data Research Network (Canada) from 2019 to early 2024. He has been involved in healthcare and health research as a patient, a caregiver, and a member of the public, often in relation to children's health, since 1995. Frank taught English at Centennial College in Toronto for 30 years.
Kim McGrail is a Professor in the UBC School of Population and Public Health and Scientific Director of Health Data Research Network Canada. Some of her research uses large data sets to look at the effects of big policy changes such as changes in the way physicians are paid. She also has led deliberations with the public on how health data can be used to benefit people and communities.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR Diabetes Action Canada. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Diabetes Action Canada episode.
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podcast for practical patient engagement. Today, Kathy will be recapping the episode in which Tracy McQuire and Linxi Mytkolli came to talk about the Strategy for Patient-Oriented Research Diabetes Action Canada, or DAC as its known for short. In case you haven’t listened to that episode, Diabetes Action Canada is a network of patients, care partners and researchers that work together to identify the health concerns of those living with diabetes and co-create research projects to address them. It is funded by the Strategy for Patient-Oriented Research, also known as SPOR for short, which is a national coalition that was created by Canada’s major public funder of health research to champion and support patient-oriented research. Alright — take it away Kathy with your onePERspective.
Kathy Smith:
Building equitable relationships is the cornerstone of an engagement strategy. Never underestimate the time it takes to build trust, transparency; understand and address/accept the inevitable power imbalances. Over communicate. Over explain. That was one of the many strong messages shared by Tracy McGuire and Linxi Mytkolli of Diabetes Action Canada. And how many times have we heard that very same message from our other engagement platform podcasters? Relationship building takes a patience of time to do it right. Once everyone gets on board and speaks the same language, you can proceed full steam ahead!
Something remarkable and perhaps unique is that DAC has a dedicated patient engagement navigator/manager on staff. What a thrill to hear Linxi and Tracy single out this dedicated manager position as an absolute “must” to set everyone up for success with patient partnering in research. The Navigator is a “niche role” that can’t be filled by just anyone. It requires someone laser focused, experienced, and well-educated in team building. This dynamic multi-tasker must train, upskill, mentor, facilitate and co-ordinate events. The Navigator communicates with each group individually and collectively. That’s a lot of work and a lot of hats to wear! And Linxi wears yet another hat to balance the wants and needs of her four “L” partner groups:
the Lived — the people who have had the healthcare experience;
the Loved — the care partners for the patient;
the Learned — the academics;
the Labourers — your clinicians and co-ordinators.
While the 4 “L”s contribute uniquely important lived experiences and expertise, each speaks with their own jargon. So, like and orchestra conductor, the navigator must blend these lexicons into a common language. “Re-calculating” as Siri tells us - aligning to collaborate, to set the goals and logistics of a co-designed study.
I was thrilled to hear Tracy describe how DAC is now gathering patient ideas for research studies and then helping patients put their ideas into research proposals as lead researchers. For patients by patients – that’s quite a mindful, patient-facing innovation. Standardized screening for diabetic retinopathy led by Dr. Valeria Rac was one such study completely driven by patient partners!
DAC stands out for its depth and breadth of patient partnership opportunities anywhere along the study continuum and for all the training partnerships that they have established as well. It’s nice to see DAC’s emphasis on evaluation. That to me addresses a big need in patient engagement. What is our value? How effective are we? What has worked well? What do we need to re-calculate? I was impressed that DAC is working at two levels with their researchers including the patient partners and with their policy makers to measure the impact of patient engagement in research. With input from all stakeholders, they have Key Performance Indicators (KPIs) - quantitative and qualitative measures of effectiveness. Tracy and Linxi, you certainly have shown DAC has a very robust engagement strategy.
Personally speaking, points to ponder
1. I love, love love Linxi’s four “L’s”! What a great way to describe the key stakeholders involved in Patient Partnering. I think one more L needs to be in the mix…The LEADERS – the decision makers and the funders – the organizations who give the projects their fuel. Maybe LEADERS feel they need to stay at arms length for impartiality. But I believe PER platforms would be better served if the LEADERs learned more about and better understood patient engagement in research. Research pivots on funding opportunities.
2. PER costs, including administrative tasks, should become a specific line in the budget funding formula. PER management is often relegated to an add-on status – a strain on an already stretched research budget. And the time to administer PER tasks is usually piled onto an already overwhelmed researcher.
3. Every patient engagement platform podcast so far has stressed the need to take the time to build a safe space where equitable relationships can flourish. It’s all about respect. And it takes a patience of time to do it right.
4. If every co-design research group could hire a highly educated, highly skilled, focused patient engagement navigator like Diabetes Action Centre has, that would be a dream come true!
Anna:
Thanks so much Kathy for your onePERspective. One of my many favourite things about the Diabetes Action Canada episode was all of the thought that Tracy and Linxi have clearly put into creating environments that truly foster meaningful and active partnerships. I also really appreciate their ability to provide very in-depth and descriptive answers and then scale back and also provide a high level summary of the big picture, increasing the accessibility of their messages to a wider audience. If you haven’t listened to the episode yourself, something else that I want to point out is that we spent a lot of time discussing evaluation in the context of patient engagement. Here, Linxi and Tracy did a great job of providing useful information about how they frame and measure different key performance indicators within the network. They also shared their intuitive approach to asking patient partner focused evaluation questions such as “what do you hope to bring to this opportunity” and “what do you hope to get out of this opportunity.” This direct and meaningful approach towards planning and evaluating patient engagement opportunities is something that I’m definitely going to bring forward in my own work.
Looking ahead — on our next episode of asPERusual, slated for release on May 12, I will be speaking with guests Catherine Street, Frank Gavin, and Kim McGrail from the Strategy for Patient-Oriented Research Data Platform. We’ll be talking about their work to engage Canadians in critically considering and reimagining the possibilities for their personal health data! Until then, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you’re there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at [email protected]. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
Episode overview
In this episode of asPERusual, host Anna Chudyk sits down with Tracy McQuire and Linxi Mytkolli from Diabetes Action Canada to learn all about the different ways in which this Strategy for Patient-Oriented Research network is committed to improving the lives of persons living with diabetes. Highlights include in-depth discussions of:
* the different ways in which Diabetes Action Canada brings together the 4 L’s (people with lived, loved, learned, and labored experience of diabetes) in finding a common language and space for them to work together to make better research, better policy, and better programs that ultimately improve the lives of those living with diabetes.
* Diabetes Action Canada’s innovative approach to evaluation (at the network and individual level) and what it reveals about the ways in which the network stands out;
* the depth and breadth of involvement and engagement opportunities within the network, as well as their countless benefits; and
* key take-aways including the applicability of patient engagement across the spectrum of research and the need to democratize how we do patient engagement.
Hooked? Read press play and be sure to subscribe!
Meet our guests
Tracy McQuire: has been with Diabetes Action Canada for over 5 years, first as the Manager, Research Operations and now as Executive Director. Tracy brings more than 15 years of research project and program management experience as well as research operations and strategic planning expertise. Prior to joining Diabetes Action Canada, Tracy was the Business Manager for the Toronto General Hospital Research Institute at University Health Network (UHN), leading the strategic planning process and implementation strategy to align research priorities to clinical programs. Tracy holds both a Bachelor’s degree in Biology and a Master’s Degree in Genetics from Queen’s University and obtained her Project Management Professional designation in 2012.
Linxi Mytkolli: started with Diabetes Action Canada as a Patient Partner for over a year. She is now excited to join the team in her new capacity as the Lead of Patient Engagement and Knowledge Mobilization. Prior to joining DAC, she was a Senior Program Manager supporting a national suicide prevention and life promotion program with the Mental Health Commission of Canada. In this work, she focused on centering the wisdom of those with lived and living experience, while also translating findings from academic partners into tangible tools for the participating communities. In addition to her leadership in the mental health space, Linxi has more than six years of experience leading national programs in urban research, youth wellbeing, and sustainability in healthcare. Linxi holds a Bachelor of Science in Biopharmaceutical Sciences (uOttawa) and a Master of Science in Sustainability Management from the University of Toronto.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR National Training Entity (NTE) Passerelle. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven’t yet listened to last weelk's episode or you have and are interested in hearing someone else’s take on it, this short (~10 minute) segment is for you!
Episode Transcript:
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podcast for practical patient engagement. Today, Kathy Smith will be discussing the episode in which Annie LeBlanc and Yvonne Pelling came to talk about the Strategy for Patient-Oriented Research National Training Entity Passerelle, or NTE as its known for short. The Strategy for Patient-Oriented Research, also known as SPOR for short, is a national coalition that was created by Canada’s major public funder of health research, the Canadian Institutes of Health Research, to champion and support patient-oriented research. As a reminder, patient-oriented research focuses on patient and public identified priorities and outcomes and engages patients and the public as members of the research team (which is referred to in Canada as patient engagement in research). The NTE is a network of networks that was funded by SPOR to increase capacity for patient engagement and patient oriented research. You might want to check out our website, asperusual.substack.com, if you want help keeping all of those details straight. Ok. Enough from me. I’ll turn it over to you Kathy for your onePERspective.
Kathy Smith:
Thanks, Anna. Here's another enlightening episode for anyone interested in engaging in patient oriented research. In my last personally speaking, I asked our listeners to consider dreaming big for a pan-Canadian network of networks. Et voila!! Voici! Here it is! SPOR has already got that started. SPOR? SPOR is the Strategy for Patient-Oriented Research. Members Yvonne and Annie enthusiastically enlightened us about the potential of SPOR’s National Network of Networks they call the National Training Entity (NTE).
Yvonne and Annie tell us NTE aims to build capacity by gathering all POR and PER lessons learned to create training courses and mentoring activities that help make connections to empower patients and researchers alike. Training and mentoring tools are to be developed for managers and funders as well. How? They describe NTE as building “little bridges” (or “passerelles” en francais) that can perform as connectors, catalysts, and facilitators to build PER4POR capacity. PER — patients engaged in research — for POR — patient oriented research. The network of networks can be used by patients wishing to engage in research (known as PEiRs). Researchers wishing to know more about patient-oriented research or to find PEiRs to help in their research can gain access through the passerelles as well.
NTE’s mandate is to connect its user to the right training in the right context for the right person in the right setting, at the right time. Moreover, NTE’s passerelles facilitate connections. The NTE aims to short circuit connecting the right research engagement need to the right PEiRs to fill the need. I'm hoping that all these national capacity building connections, these passerelles (I like that word a lot) will help to transform the traditional research landscape into a much warmer, safe space, an equitable patient engaged in research environment that facilitates PER 4 POR: Patients Engaged in Research for Patient-Oriented Research.
Key messages
For me, the three key messages gleaned from Yvonne and Annie’s SPOR-NTE presentation are:
Know yourself and be clear in articulating what you can contribute to the research. Shakespeare told us centuries ago: “To thine own self be true.” Bring your authentic self when partnering in research. Academic knowledge is always enriched and enlightened when the research is grounded and relevant and bridged with the authenticity of real world experiences.
Interdisciplinary collaboration: More and more and more in the 21st century, we're going to see this as the norm for conducting research. We can all benefit from training to join forces and to engage collaboratively in patient-oriented research.
Critical thinking skills and creativity are not the exclusive realm of the academic experts. Amalgamating lived experience expertise into the PER4POR research landscape will move us beyond the traditional ways of thinking about and conducting research in separate silos. Patients, researchers, clinicians and policymakers can build capacity and research with, by, and for patient partners with access to this powerful pan-Canadian SPOR NTE support.
Personally speaking, points to ponder
Yvonne and Annie, like all the other podcasters before, have told us how to successfully interact. Bring your authentic self. Be open minded. Keep calm and steady and results-focused. Attitude is everything. Attitude, not aptitude, determines altitude.
Interdisciplinary, interprofessional and inclusive research is becoming the modus operandi for the 21st century. Are we able to build equitable partnerships or do we need some extra training? Building relationships seems to be the secret sauce for successful patient engagement in research. Will the NTE be able to equip the different stakeholders with effective collaborative communication skills? As of today, SPOR’s ambitious pan-Canadian Network of Networks National Training Entity is just a repository of PER4POR resources and tools. I dream of growing the training entity to include POR navigators charged with managing all PER4POR activities. A navigator passerelle will be of an enormous bridging benefit to all POR stakeholders. What is needed next for NTE to hire navigators to train, to connect, and to mentor patient partners engaged in research and the researchers wanting to engage them? How can we encourage research, public, and private funders to financially support a navigator agency? How can we show them this agency would decrease time and increase the efficiency for researchers burdened with these added PER4POR tasks right now?
Anna:
Thanks so much Kathy! You always manage to distill episodes so nicely. I know that a major component of engagement is interpersonal connection, but I wonder if there’s some role for artificial intelligence to help make your navigator idea a large scale reality? Otherwise, or maybe in tandem, I think that a peer-to-peer individual or group buddy system could also help make your idea a sustainable one. Lots to think about, which is one of the many reasons I love your segment. Thanks so much for inspiring it and always making time for it.
I’ll be back in 2 weeks, so on April 22, with season 2 episode 6 of asPERusual. On it I will be talking with Tracy McQuire and Linxi Mytkolli from Diabetes Action Canada, a SPOR network focused on bringing patients, their caregivers, and researchers together to identify the health concerns of those living with diabetes and to co-create research projects that address these concerns. If you’re looking for something to keep your patient engagement in research juices flowing until then, I’ve got just the thing for you. Our friends and colleagues at the Patient Advisors Network have just released a report titled, Reimagining the Research Landscape. In this report, they offer insights from 262 patient and caregiver partners about how CIHR/SPOR can foster and provide support at all levels to better support patients and caregivers in partnering in research. When you’re really inspired after reading this report, consider checking out a study by my colleagues and I that applied a participatory process to investigate future directions for Canadian patient engagement in research. Its titled “Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers” and free to everyone to read in a journal called BMC Health Research Policy and Systems.
Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you’re there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at [email protected]. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
Episode overview
Episode overview
In this episode, we are joined by Yvonne Pelling (the Patient and Community Engagement Lead) and Annie LeBlanc (the Nominated Principal Investigator / Scientific Director) of the Strategy for Patient-Oriented Research (SPOR) Passerelle National Training Entity (NTE). Through their engaging discussions, Yvonne and Annie help listeners re-examine what it means to build patient-oriented research capacity among academic researchers, patient partners, and institutions. As a fun bonus, they also explain the meaning of the word “Passerelle” (*hint* it’s related to the imagery in the episode's thumbnail image).
Meet our guests
Yvonne Pelling: is the Patient and Community Engagement Lead at the SPOR Passerelle National Training Entity. Yvonne began her work in patient-oriented research through the SPOR project, Access Open Minds sitting on the Family and Carers Council. This work sparked her interest in capacity building, training, and learning. Yvonne is currently pursuing a Master’s Degree in Interdisciplinary Education in Learning Sciences at the University of Calgary.
Annie LeBlanc: is the Nominated Principal Investigator / Scientific Director at the SPOR Passerelle National Training Entity. Annie is also a full professor at Laval University in the Faculty of Medicine, and a researcher at Vitam - Laval University’s research centre on sustainable health. Annie came to research through her role as a high school teacher and informal caregiver, which inspired her to learn more about patient education and empowerment. Annie obtained a master’s degree, a PhD, and then entered into her current roles within the field of Patient-Oriented Research.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR Chronic Pain Network. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven’t yet listened to last week’s episode, or you have and are interested in hearing someone else’s take on it, this short (~10 minute) segment is for you! As a heads up -- the episode opens with a notice about the "Health Data for All of Us: Earning Trust Through Transparency" public forum that is being put on by Health Data Research Network Canada on April 23rd, 2024. Keep listening for more details about this free and exciting hybrid event.
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective – a triweekly segment focused on hearing a patient partner’s recap and reflections on the previous week’s episode of asPERusual - a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. In less than two minutes, I will hand things over to Kathy Smith, a patient partner from Thunder Bay. Kathy is once again set to offer her onePERspective on last week’s episode of asPERusual focused on the Strategy for Patient-Oriented Research Chronic Pain Network. All of the views expressed are her own.
Now before I hand things over to Kathy, I would like to briefly bring your attention to a public form that is being put on by Health Data Research Network Canada on April 23, 2024 in Montreal Canada. The forum’s title is Health Data for All of Us - Earning Trust Through Transparency. If you are interested in joining academic researchers, community groups, members of the public, industry leaders, and policymakers in timely and thought-provoking discussions about the issues of trust and transparency in the use of health data in Canada, this forum is for you! This day-long event is open to the public, and a hybrid event, meaning that you can attend virtually or in-person. You should note however that there is a charge of $10 if you would like to attend in person and are a member of the public, a community group or student; the tickets go up in price dependent on whether you are a researcher or from the public or private sectors. The stellar lineup of speakers includes health data researchers, data equity advocates and patient partners committed to building trust among the public in the access, use and sharing of health data. There is a limited amount of available tickets so be sure to snag yours - we’ve posted a link to the event on our Substack or you can always Google, Health Data for All of Us - Earning Trust Through Transparency public forum. I’ll be checking out the event virtually so hopefully I will see you there!
Alright, now over to you Kathy. Please take it away with your onePERspective.
Kathy Smith:
Thank you, Anna, for all the hard work you've done to show us a variety of platforms for engaging patients in research. Readers can see common threads developing throughout each of them, but they are in for something new with the CPN’s platform. That's the Chronic Pain Network. Other chronic diseases like arthritis, cancer, heart and stroke, or diabetes engage with long standing, recognized medical disciplines with well entrenched power imbalances that are undergoing adjustments in attitude and in collaborative strategies to accommodate patients as partners. The Chronic Pain Network, made up of a multi-stakeholder group, including patient partners, were the original ones who lobbied the College of Physicians and Surgeons to recognize pain as a brand new standalone, certified medical discipline. So lived experience partners and the medical and clinical experts worked in tandem right from the get go in this brand new field of medicine. They started out as equal shareholders developing this new discipline. One group did not have dominance over the other. Their network did not have to write a power imbalance so they could move forward smoothly and quickly. Together they will be evolving the pain discipline traditions while they also grow their already strong strategies for research and supports for patient engagement.
It is significant to note that Norman, a medical member of the Chronic Pain Network, considered listening skills to be of utmost importance for building a respectful, collaborative relationship. The Lived Experience member Delane concurred. Listen carefully because much can be learned when you engage open minded. Is open mindedness then, the secret sauce to relationship building? Delaine suggested — attitude is everything.
Attitude, not aptitude, determines altitude.
As you have heard in every asPERusual podcast to date, building a strong relationship is the foundation for successful engagement, and it takes a patience of time and a whole lot of money to do it right. CIHR (Canadian Institute for Health Research) was their long time financial backer as they formed and set out their vision and values. They've even branched off a pediatric pain subnetwork for their special needs and interests. Time and money help this diverse group of stakeholders create high functioning committees that have worked to educate all future health care professionals. Norman suggested that researchers, as well as patients, could access their shared body of knowledge through the hub to connect, contribute, collaborate, and learn more about chronic pain etiology and treatments. Access is set up through the Canadian Pain Network’s website. It's really nice to see such cooperation and collaboration and equality in the relationship. Research studies for patients led by patients are also now in the works in this brand new co-created field of medical discipline. Well done all.
PERsonally Speaking – Points to Ponder
This time it's just one. There is a current ad on TV enticing potential lottery winners to dream big and then to dream bigger. Is patient engagement in research ready to do that too?
I dream of an epicenter — a national umbrella for all visions and missions from all of these great platforms for engaging patients in research. AsPERusual is highlighting excellent patient engaged in research plans with common strategies and some uniquely suited to their focus group. Ones like the Canadian Cancer Society supporting patient-oriented research, EMPaCT, and the Canadian Pain Network, with more groups yet to come.
But if research during the pandemic taught us anything, it was that the sum is greater than any of its parts. We saw research moved further and faster when it was handled on a collective, large scale, under a global umbrella, and not in individual silos. NATO was a very effective good example of a sole source funding agency and a network of networks facilitating military research around the world. They teamed up, they divided the tasks, they subtracted the duplications, and they multiplied their successes, strategizing for pandemic prevention and remediation.
So can all our PER groups dream big? Can we collectively create a national epi-center for all things related to engagement of patients and research? A one stop shop, a network of networks and epicenter that could be tasked to manage sole source funding for research projects involving patient engagement. A national database manager to match up the right research project requests with the right patients with lived experience. Education and training experts for both researchers and patients. Knowledge assimilation and mobilization of findings. I think this is a big gap in research. Sharing results with the general public. Perhaps my dream agency can handle that for them. Administrators for patient reimbursements using one universal tracking system. Nothing is more tedious, tiresome and stress producing for me at least than handling all of that reimbursement requirement for the different agencies I work for. Administrators to manage remuneration with defined tasks and set fees. So let's dream big.
Anna:
Thanks so much Kathy for offering your ONEperspective. I always enjoy listening to what stuck out to you the most about last week’s episode. I am really glad that you brought up the important concept of power dynamics and the recurring message related to the importance of positive attitudes, openness, and working together in true partnership. I also really appreciate you sharing how all of season 2’s episodes can be applied to creating a future vision for Canadian patient engagement in research, in much the same way as our study that inspired this podcast. I have no doubt that you have inspired others to dream big, in much the same way as you have.
As we close this episode, I’d like to remind you, the listener, to please be sure to check out our website, asperusual.substack.com, to access our interactive episode transcripts and listen to previous episodes. If you have any questions or comments, please be sure to shoot me an email at [email protected]. In 2 weeks, I’ll be back with Annie LeBlanc and Yvonne Pelling to shine a light on the Strategy for Patient-Oriented Research National Training Entity. Until then, lets try to bring an open and positive attitude to all that we do and keep up our efforts to make patient engagement the standard, or as per usual.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
Episode overview
In this episode, we are joined by Norm Buckley, the Scientific Director, and Delane Linkiewich, a patient partner, of the Strategy for Patient-Oriented Research’s Chronic Pain Network. Norman and Delane discuss the history of the network, including how it originated from years of grassroots work carried out by trail blazing physicians who innately understood the importance of patient partnership and experience. They also share details of the network’s formation, its open-minded approach to creating a community of support that truly listens to patients and incorporates their input into the research process, and engage the listener in critical thinking around the importance of patient partner compensation.
Listen here or wherever you download your podcasts!
Meet our guests
Delane Linkiewich: has been living with chronic pain for over 15 years and is a passionate advocate for people living with pain and patient engagement. Delane is currently a PhD student in the Clinical Child and Adolescent Psychology Program at the University of Guelph where she conducts patient-oriented research on peer support for pediatric chronic pain. She has been a member of the Chronic Pain Network since 2018 and sits on the Patient Engagement Committee, having co-chaired this committee for 2 years.
Norman Buckley: A faculty member since 1988, Dr. Norm Buckley is currently professor emeritus in the Department of Anesthesia, Michael G. DeGroote School of Medicine, McMaster University, Hamilton. Dr. Buckley provides chronic pain care through the DeGroote Pain Clinic at McMaster University Medical Centre. Dr. Buckley established the Michael G. DeGroote National Pain Centre and is scientific director of the Michael G. DeGroote Institute for Pain Research and Care, since 2015. He is Nominated Principal Investigator for the Chronic Pain Network, with over $30 million in funding this national research network was created to change the way pain is managed in Canada.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In this feature segment of asPERusual, guest listener and patient partner Kathy Smith provides a short recap and her key takeaways from last week's episode describing the SPOR Evidence Alliance. Whether you haven’t yet listened to last week’s episode, or you have and are interested in hearing someone else’s take on it, this short (
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Episode overview
In this episode, guests Andrea Tricco and Linda Wilhelm discuss the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance, a pan-Canadian initiative designed to promote evidence-informed health policy and practice change. They describe the Alliance’s key activities, including the process for healthcare decision and policy makers and patients and the public to submit research queries to the Alliance, explain different ways to get involved, and offer tips and resources for academic researchers and patients and care partners looking to engage/be engaged in research.
Listen here or wherever you download your podcasts!
Meet our guests
Linda Wilhelm was diagnosed with Rheumatoid Arthritis in 1983 at the age of 23. After many years of unsuccessful treatments the disease was finally managed through the arrival of biologics. Linda is a founding member and current President of The Canadian Arthritis Patient Alliance (CAPA) and a patient partner with the SPOR Evidence Alliance and The Chronic Pain research networks.
Dr. Andrea C. Tricco is a Scientist and Director of the Knowledge Synthesis Team in the Knowledge Translation Program, Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Unity Health Toronto, and an Associate Professor at the University of Toronto in the Dalla Lana School of Public Health and Institute of Health Policy, Management, and Evaluation. Dr. Tricco is also the Nominated Principal Investigator of the SPOR Evidence Alliance funded by the Canadian Institutes of Health Research. The Alliance is a pan-Canadian initiative with the potential to improve patient care through national coordination of knowledge synthesis, knowledge translation, implementation and clinical practice guideline development.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In this feature segment of asPERusual, guest listener and patient partner Kathy Smith provides a short recap and her key takeaways from last week's episode exploring EMPaCT's meaningful and purposeful approach to equity, diversity, and inclusion in patient engagement in research. Whether you haven’t yet listened to last week’s episode, or you have and are interested in hearing someone else’s take on it, this short (
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Episode overview
In this episode, guests Ambreen Sayani and Omar Khan, members of Equity-Mobilizing Partnerships in Community (EMPaCT) discuss the importance of equity, diversity, and inclusion in patient engagement in research. They highlight their group's work in creating meaningful collaborations between patients and healthcare providers and offer insights and resources for those interested in incorporating EDI in their own projects. Listen here or wherever you download your podcasts!
Meet our guests
Omar Khan is an organizer and advocate working with newcomer refugees and refugee claimants. He connects with families all across the Greater Toronto Area. Since November 2019, with residents and agency employees, he coordinates a resident-led group called Engaged Communities that focuses on youth development and mobilizing and amplifying community voices, particularly youth and newcomer voices. His involvement in healthcare advisory councils comes out of seeing the unequal health outcomes for many refugee newcomers compared to longtime residents. In addition to being a member of EMPaCT, he is currently a co-chair of the East Toronto Health Partners' Community Advisory Council.
Dr. Ambreen Sayani (MD, PhD) is a Scientist at the Women’s College Research Institute, Women’s College Hospital and an Assistant Professor (status) at the Institute of Health Policy, Management and Evaluation in the Dalla Lana School of Public Health, University of Toronto. She is Principal Investigator for the Improving Cancer Care Equity (ICCE) Research Program that aims to improve cancer outcomes for all populations groups by promoting equitable cancer prevention, early detection and access to high quality care. Dr. Sayani holds a six-year, Transition-to-Leadership Stream career development award from the Canadian Institutes of Health Research (CIHR). She is a Health Equity Expert Advisor for the Canadian Partnership Against Cancer (CPAC), a member of the Medical Advisory Committee for the Canadian Cancer Survivor Network (CCSN), and co-initiator of Equity Mobilizing Partnerships in Community (EMPaCT).
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In this season of asPERusual we're trying out a new biweekly segment called onePERspective. In this segment, a guest listener will share their individual (or one) PERspective on the previous week’s episode in the form of a short recap of the episode and their key takeaways. All views expressed are their own. So this week, tune in to check out Kathy Smith's onePERspective on last week's episode titled Patient engagement in research funding: Learnings from the Canadian Cancer Society. And be sure to leave a comment or email me at [email protected] to share your PERspective on your key takeaways and applications!
Episode Transcript:
Anna:
Hi everyone! Hope you’re having a great start to your week.vOne of my many favorite things about this podcast is the conversations that it sparks with not only podcast guests, but with its listeners as well. So I’ve decided to try out a new segment in this season of asPERusual, called onePERspective.
In this segment, a guest listener will share their individual (or one) PERspective on the previous week’s episode in the form of a short recap of the episode and their key takeaways. All of the views expressed will be their own.
Kathy Smith, a patient partner from Thunder Bay, will be this segment’s initial featured guest listener. Kathy is a cancer survivor and a cancer care partner actively engaged as a co-author in many healthcare research projects – including the study that inspired this podcast. She is one of the busiest people I know and wears many other hats, including as a patient research and awards reviewer for many organizations including the Canadian Cancer Society.
This segment was inspired by the thoughtful reflections she’s shared with me on our podcast episodes since the start of asPERusual. So thank you Kathy. And if you out there have any comments, reflections, or episode ideas you’d like to share with me, please do email me at [email protected]. They make my day and a difference in the directions that this podcast takes.
Alright. So here is Kathy Smith, offering her ONEperspective on last week’s episode titled Patient engagement in research funding: Learnings from the Canadian Cancer Society. All views expressed are her own.
Kathy Smith:
The purpose of the Canadian Cancer Society (CCS) is to unite and inspire all Canadians to take control of cancer. CCS is committed to integrate the principles of equity, diversity, inclusion, and accessibility into all aspects of research funding by including the voice of people affected by cancer. Today’s podcast describes how CCS collaborated with People/Patients with Lived Experience (PWLE) to develop their people/patients engaged in research (PER) platform to help achieve these goals.
In this podcast, four members of the CCS Advisory Board – a mix of staff and PWLE, shared many helpful hints they gleaned while constructing their public/patient engagement in research (PER) framework to help CCS plan, implement and evaluate PER at CCS.
Here are some of my key takeaways:
* To develop a strong framework, you need clear communication and meaningful collaboration. Take the necessary time to relationship build first. Discuss roles, responsibilities, expectations to come up with a clear, agreed-upon purpose at the outset. Then collaboratively set out your Terms of Reference (ToR) with your patients, research team members and senior leaders. The ToR should be individually tapered by the partners to meet the specific study needs mindful of the common CCS purpose.
* The mission and vision and values that you set in your ToR will become the measurable end points to evaluate the success of your PER strategy.
* PER involvement continues from the cradle to grave of a research project. The PER framework must be fluid and flexible enough to anticipate that the people and their roles may change to meet the needs of the project and to make best use of their unique lived experiences and varied skill sets.
* When the Advisory Group identified a lack of diversity and inclusion within their group, they reached out to partner organizations from underrepresented communities and specific disease sites. They solicited input, held, and attended workshops, and included new members into their group so that their PER framework is equitable, inclusive, and authentically represents diversity of lived experiences.
* Another gap in their framework identified by the members and now being addressed is the need for equitable access to PERs for all research scientists. Pure scientific researchers would benefit from training in the PER platform. A national repository to match the experience and expertise of PERs in the database with researcher requests for PERs can strengthen meaningful and respectful PER engagement. Research to improve the lives of patients must be informed by their needs and priorities said researcher Dr. John Marshall of Unity Health. Public/Patients with Lived Experience engaged in research ground the research in needs and priorities identified as important and relevant to patients.
The speakers today were so enthusiastic! Their comments showed how strongly committed and united they were in focus while they evolved this framework for engaging patients in research. Authentic and meaningful patient engagement will better the outcome of research for all patients. This new PER framework will be a strong tool to “unite and inspire all Canadians to take control of cancer.
Anna:
Thanks again Kathy for offering your ONEperspective on last week’s episode. It has hopefully inspired those who’ve listened to further reflect on their key takeaways from last week, as well as inspired those who have not listened yet to check out the episode on our website asperusual.substack.com or wherever it is that they download their other podcasts from. We’ll be back next week with an episode focused on equity, diversity, and inclusion in patient engagement in research with guests Ambreen Sayani and Omar Khan talking about their innovative work with the Equity-Mobilizing Partnerships in Community (EMPaCT) patient engagement model. Until then, have a great week and keep working at making patient engagement the standard, or as per usual.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
Meet our guests
Don Wood was a caregiver for his late wife Sherry who battled Stage 4 metastatic colon cancer for 3 years. He also lost his only brother Ken to leukemia as a young adult. Don focuses his time now when not golfing or skiing working and volunteering his time primarily in cancer research for several provincial and national health care organizations including the Canadian Cancer Society. He recently co-authored “Co-Creation of a patient engagement strategy in cancer research funding” with the Canadian Cancer Society.
Judit Takacs (she/her) is the senior manager for partnerships and engagement in research at the Canadian Cancer Society. She was the staff lead in co-creating the patient engagement in research strategy and works to diversify voices in research and research funding. She holds a PhD from the University of British Columbia and a coffee from the local coffee shop – though the latter is not yet a formal degree.
Dr. Michael S. Taccone is the proud Founder and CEO of Childhood Cancer Survivor Canada, Canada’s first survivor-led organization which aims to unify and empower the growing childhood cancer survivor community through awareness, education, access to care and peer-support. By training, Michael is a senior resident of neurological surgery at the University of Ottawa and completed his PhD in the Surgeon-Scientist Training Program at the University of Toronto. Himself a survivor of childhood cancer, Michael merges his experiences as a patient advocate, cancer researcher and junior physician to influence policy, research and practice for children and young people living with and beyond cancer in Canada. As a patient partner and co-investigator, Michael contributes to several CIHR-funded AYA and childhood cancer national research programs, is an acting co-chair of the Integrated AfterCare Advisory Council with the Pediatric Oncology Group of Ontario, and informs strategic development and capacity building for patient-engagement initiatives at Sick Kids Hospital, the Canadian Cancer Society and Ontario Health.
Suzanne Bays has been the caregiver for her father and husband, both of whom died from metastatic colon cancer. She spent 2019 as a Fellow at Harvard’s Advanced Leadership Initiative, where her Capstone Project focused on improving the lives of those with Advanced Cancer. She continues this work with the Canadian Cancer Society as a Patient Advocate, helping create action-oriented strategies to impact the lives of those touched by cancer. She is a co-author of the articles “Co-Creation of a Patient Engagement Strategy in Cancer Research Funding” as well as “Supporting People and their Caregivers Living with Advanced Cancer: From Individual Experience to a National Interdisciplinary Program”.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In our study, participants stated that there is a lack of communities of practice and professional networks that foster a culture of engagement within and among the patient engagement community. How do we create community; more importantly, how do we sustain the community once it's in place?
To help answer this question on the final guest episode of Season 1, we have Alies Maybee with us. As a patient partner since 2011, Alies has collaborated in many aspects of healthcare with a special focus patient engagement and strengthening the patient partner community, including helped co-found the Patient Advisors Network (PAN), a national community of patient and family advisors/partners.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com -
In our study, we heard from participants that traditional academic culture is not designed to support patient engagement, let alone effective patient engagement. So how do we make progress in patient engagement when we're swimming against such a massive current?
To help us answer this, we have two great guests today!
Isabel Jordan draws expertise from her experience navigating systems as a disabled parent of two disabled young adults. Isabel both partners in research projects and helps researchers and organizations to partner with patients in a safe, relational way.
Dr. Christine Chambers is an international leader in children’s pain research and a national voice for children’s health. Named one of Canada’s Top 100 Most Powerful Women, she creates connections and partners with patients to advance research, mobilize knowledge and improve the lives of children, youth and families. She is a Professor and Tier 1 Canada Research Chair in Children’s Pain at Dalhousie University, a faculty member in the Centre for Pediatric Pain Research at IWK Health Centre, and Scientific Director of Solutions for Kids in Pain and the CIHR Institute of Human Development, Child and Youth Health.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com - もっと表示する
