Episoder
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One way to look at today's guest is that if he were a zebra, he would have extra stripes because, unfortunately, he has more than one rare condition, which is a first for a guest in our Year of the Zebra series. After struggling with various GI issues most of his life, Brian Kennedy, an Elsevier colleague, was diagnosed several years ago with exocrine pancreatic insufficiency (EPI), a rare disorder that prevents the pancreas from playing its proper role in aiding digestion. At the same time, he was told he had MALS, another rare condition, that interferes with blood flow in the abdomen. Both of these disorders can cause chronic pain in addition to a host of other difficult symptoms. While it was a relief to finally have answers, Brian says it also sparked a long period of grief. “You start to realize your life is not going to go back to the way you had it, but you just have to accept it and then you sort of think about the things I can do and focus on those and not the things that I can't do anymore,” he tells host Michael Carrese. That shift in perspective and connecting with a community of other EPI and MALS patients has helped Brian to stay as positive as possible and focus on being as healthy as he can under the circumstances. Listen-in to learn about these challenging diseases, the therapy that is helping Brian eat without subsequent debilitating pain and his advice to providers about dealing with rare disease patients.
Mentioned in this episode:
Primal Pancreas by A. Toxopeus
Mission Cure
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“If you really want to build a relationship with your patients, a model based on insurance doesn't enable you to spend enough time with them to build that connection,” says Dr. Ginamarie Papia, a practitioner of integrative medicine based in New York. That explains why the 30-something entrepreneur has just launched her own virtual “direct-to-patient” medical practice that she describes as a more affordable version of the concierge model. The move reflects frustration among providers of her generation with the confining, administrative approach to healthcare delivery that’s contributing to high levels of burnout, and their desire for a better work-life balance. It also reflects a realization that millennials and subsequent generations are digital natives who grew up in a culture with high expectations for convenience. Dr. Papia tells host Michael Carrese that her primary care practice will provide natural, holistic solutions with a particular focus on weight loss and women’s health, including options beyond birth control medication for younger women struggling with hormone or menstrual cycle issues. Join us for a grassroots-level look at evolving models of healthcare delivery, the benefits of integrative medicine and the role of social media in providing patient education.
Divinely Guided Health
The Upward Spiral Podcast
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As we continue our Year of the Zebra focus on rare disorders, we’re going to focus on the productive relationships that can develop between the families of children with rare diseases and the researchers who are trying to develop treatments and cures. Join Raise the Line host Lindsey Smith as she explores the various dimensions involved with Jennifer Wells, whose young son has a neurodevelopmental syndrome called CAGS (Chopra Amiel Gordon Syndrome) and her son's physician, Dr. Maya Chopra, a clinical geneticist who co-discovered the gene in question and who is leading an international study on CAGS. “It's so important as researchers that we engage and include families in our research design and methodology so we understand what are the most relevant and meaningful endpoints that we're going to use for trials,” explains Dr. Chopra, director of Translational Genomic Medicine at the Rosamund Stone Zander Translational Neuroscience Center at Boston Children’s Hospital. In turn, family members can be a critical connection to the tightly-knit communities that grow up around specific disorders which are eager for the latest information. “As materials become available from Dr. Chopra and her research team, then I try to partner with them to get it out to the community and have those resources available,” says Jenifer. Tune in to this fascinating discussion to learn about other benefits of these relationships, what’s happening in CAGS research, and an approach to research being pursued by Dr. Chopra that will help make small studies more scalable, potentially benefitting multiple conditions at once.
Mentioned in this episode:
Rosamund Stone Zander Translational Neuroscience Center -
In 2010, our guest, Rob Long, was on the cusp of an NFL career after being a star punter at Syracuse University. But that bright future was sidelined when Rob was diagnosed with a rare and aggressive brain tumor just five days after his final college game. Fortunately, emergency surgery and treatment gave him a second chance. As you’ll learn in this fascinating episode of Raise the Line, a new purpose took the place of his NFL dreams and today he's the executive director of Uplifting Athletes, a nonprofit using sports to raise awareness and resources for rare diseases. One signature program developed under his leadership is the Young Investigator Draft held annually since 2018 at the home stadium of the Philadelphia Eagles. “Our program is modeled after the NFL draft, but instead of drafting the top athletes in the country, we draft and fund the next generation of rare disease researchers,” Long tells host Lindsey Smith. So far, Uplifting Athletes has provided fifty researchers with over one million dollars in grants through this approach. Tune in to learn about other innovative work that has connected hundreds of rare disease patients with professional athletes and provided opportunities for researchers to attend patient & family conferences as our Year of the Zebra focus on rare disorders continues.
Mentioned in this episode:
Uplifting Athletes
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Given Osmosis from Elsevier’s mission to educate the next generation of healthcare providers, it’s fitting that our 500th episode of the Raise the Line podcast features a conversation with Parsa Mohri, a medical student at Acibadem University in Turkey. As you’ll learn in this thoughtful interview with host Hillary Acer, Parsa applied a “Monday morning” test in choosing medicine as a career: what kind of job would he feel motivated to go to at the start of every work week for decades. “I picked medicine because I could find meaning and value in the work as well as enjoying it at the same time,” he explains. Parsa has also sought out meaningful roles on campus, including serving as a member of a committee that gathers feedback from students on the effectiveness of the education they are receiving and shares it with faculty. “This gives faculty a chance to offer any form of alternatives so when the next students come by, they will have a smoother and a more efficient education.” That drive to improve medical education also explains Parsa’s involvement in the Osmosis Health Leadership Initiative where he is guiding and mentoring fellow medical students and helping to foster a supportive and inclusive learning community. Parsa is a great example of the many compassionate and creative medical learners we have featured throughout the 500 episodes of Raise the Line, and we hope to introduce you to many more inspiring future clinicians as the podcast continues.
Mentioned in this episode:
Acibadem University
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“When I make a diagnosis of cancer, that's changing the landscape of that patient's life forever. Their trajectory is being set by the words I write down on my report. So, that’s why I say pathologists are the most important doctors you’ll never meet,” explains Dr. Jennifer Hunt, interim dean at the University of Florida College of Medicine. As she tells host Michael Carrese, it was the intervention of mentors that facilitated her exploration of pathology, sparking a passion in her for the importance of mentorship and sponsorship. Her career as a practitioner, educator and leader at some of the most prestigious health systems in the country has provided Dr. Hunt with many opportunities to pay that assistance forward and has led to an interest in coaching as an additional modality for career and personal development. “In medicine, coaching has been underutilized but as a dean, I'm seeing more requests for recruitment packages that include coaching, and I think that shows it's becoming a more mainstream tool.” This Raise the Line episode also covers how the college is preparing students to practice medicine in a world being reshaped by artificial intelligence, and the advantage of being able to offer them a wide range of clinical settings from urban to rural, and academic to community-based. “We have educational venues that cover all of the practice of medicine and that also opens up possibilities for doing community-based research and clinical trials enrollment across lots of different settings.”
Mentioned in this episode: University of Florida College of Medicine
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“Nurses have a lot of answers. We're problem solvers. We're innovators,” says Dr. Sarah Szanton, who is a case in point for using her experience doing home visits as a nurse practitioner to help pioneer an innovative model of elder care called CAPABLE. It’s a four-month long program in which a nurse, occupational therapist and handy worker address difficulties an older adult may have in daily living as well as the safety issues in their home so they are able to age in place while achieving the best possible health status and quality of life. So far, it has served 10,000 people in twenty-three states, and efforts are underway to scale the model as broadly as possible to meet the needs of the country’s burgeoning senior population. “If the CAPABLE program were a drug, it would be a blockbuster. It cuts disability in half and saves seven times what it costs,” she explains. As you’ll learn in this informative conversation with our new Raise the Line host Caleb Furnas, Dr. Szanton is in a position to shape healthcare delivery far beyond elder care in her role as dean of the Johns Hopkins School of Nursing. Tune in to learn about a community healthcare model being developed based on work in Costa Rica, and how the school deploys simulation technologies to hone difficult skills and develop empathy for both patients and fellow providers.
Mentioned in this episode:
Johns Hopkins School of Nursing
CAPABLE
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You might think training for and completing ultramarathons while managing the long hours and other demands of a medical residency would be too much to handle, but in the case of Dr. Estello Hill, athletics have fueled his success on the job. “It's really taught me what I'm capable of, how I can push myself and when I should dial back. I think it's given me an intense sense of balance with everything,” he explains. Dr. Hill just wrapped up his internal medicine residency at the University of British Columbia and has begun a fellowship there in gastroenterology where he can pursue his special interest in the gut microbiome. “It's an exciting space that I think is going to open up some new understanding for a lot of disease processes that we don't actively understand now, and also potentially open up new treatment pathways.” In this inspiring installment in our NextGen Journeys series, Hill and host Hillary Acer also discuss how he sees AI being integrated into medical care, and his interest in longevity medicine, complete with book recommendations on nutrition and other keys to a healthy lifestyle.
Mentioned in this episode: The University of British Columbia
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For our NextGen Journeys series, host Hillary Acer sat down with Dr. Brian Le at a major moment of transition as he was just finishing up his residency in family medicine at Adventist Health in Glendale, California. As he embarks on his next chapter, Dr. Le reflects on the highlights of his medical education journey and takes stock of the key lessons he will bring forward with him. “I think the biggest thing that I've learned so far is you really don't know what you don't know, which goes to one of the reasons why I wanted to pursue medicine... there's always an endless pursuit of knowledge and of improving yourself,” he shares. There’s also an endless amount of knowledge coming at today’s clinicians which, he says, requires a good dose of humility. “Those who don't remain humble, in my opinion, can't really thrive in this environment just because there's always something new to learn.” Dr. Le’s learning journey included earning a DO from A.T. Still University School of Osteopathic Medicine in Mesa, Arizona -- one of Osmosis’ key learning partners -- a master's degree in medical health sciences from Touro University in California, and serving as an Osmosis Medical Education Fellow and curriculum consultant. Considering that wealth of education and experience, it’s no wonder you’re in for a wisdom drop on learning, medicine, and the future of healthcare from one of the newest members of the next generation of caregivers.
Mentioned in this episode: A.T. Still University School of Osteopathic Medicine
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In this installment of in our Next Gen Journeys series featuring conversations with learners and early career practitioners in medical professions around the globe, we introduce you to Dr. Bradley Max Segal, a physician in the Department of Health, South Africa with a self-described passion for technology and innovation. Although he’s only a few years out of medical school, Dr. Segal has worked extensively at the intersection of healthcare and data science to develop solutions to the challenges found in low resource health systems, often serving as a bridge between technical and clinical teams. “Oftentimes you have groups that are speaking a completely different language so the approach I take is about being aligned in terms of what the problem is, aligning the language and aligning the solution,” he tells Raise the Line host Lindsey Smith. Of course one of the biggest questions in healthcare regarding the use of technology is the role of AI. On the plus side, Dr. Segal sees great potential for AI chatbots to be used as an extension of very limited clinical staff in under resourced areas leading to improved patient engagement and understanding of their health. He cautions, though, that providers need to develop the ability to discern the quality of the many AI tools that are coming their way at a fast pace. “I think the main skillset that's going to become increasingly relevant is the ability to understand how these systems are evaluated and where they can go wrong. Understanding how not to use them is oftentimes more important than when to use them.” Join us for an insightful conversation on the realities of deploying technology in healthcare especially in low-resource areas.
Department of Health South Africa
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Today on Raise the Line, we make a stop in Northern Europe on our ongoing tour of medical education around the globe and bring you the perspective of Dr. Povilas Ignatavicius, a hepato-pancreato-biliary and liver transplant surgeon and vice dean at Lithuanian University of Health Sciences, which is the largest institution of higher education for biomedical sciences in that country. In particular, Dr. Ignatavicius shares his insights on medical simulation and student evaluations, which are among his areas of responsibility. As he describes to host Michael Carrese, his school takes an approach to simulation that values a continual presence of instructors and distributes resources so that individual programs such as surgery and nursing can offer access to what he describes as improved simulation technology. “Our students are exposed to medical simulation starting in year one. Our plan for the next year is that they will spend about 30% of the time with medical simulation at different levels,” he explains. This enlightening conversation also touches on the growth of international students at the university, how AI is impacting education, and a key quality that he thinks sets his school apart from others in Europe.
Mentioned in this episode:
Lithuanian University of Health Sciences
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Last year’s declaration by the U.S Surgeon General that loneliness and isolation are a public health crisis was based on research showing that they have a negative impact on mental health, blood pressure, cognitive performance and, most relevant to our discussion today on Raise the Line, immune system function. That’s why it’s important for people dealing with chronic illnesses to stay socially connected at whatever level they are capable of, says our guest Dr. Rose Perry, a neuroscientist and executive director of an applied research non-profit called Social Creatures. “When your symptoms aren't good, being isolated can be like throwing gasoline on the fire. I don't think lack of social connection is a cause of chronic illness, it's really about setting conditions that make healing maximally possible,” she says. At Social Creatures, Dr. Perry and her team create programs designed to help populations at risk for social isolation feel like they are connected and supported. As she explains to host Raven Baxter of the Cohen Center for Recovery from Complex Chronic Illnesses at Mount Sinai, providers should be aware of programs like hers and affinity groups (e.g. knitting clubs) in their locality and engage in “social prescribing” as part of a treatment plan. “A lot of doctors will develop a resource list so they can pull it up and then kind of matchmake their patient with an organization.” Don’t miss this final episode in our special series on Post-Acute Infection Syndromes where you’ll hear about practical strategies providers can use to help address an often overlooked factor in someone’s ability to be as healthy as possible.
Mentioned in this episode:
Mount Sinai Health System
Steven & Alexandra Cohen Foundation
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Medical school and residency are daunting enough without dealing with a chronic illness on top of it, but that has been the reality for our guest today, Dr. Kyle Dymanus. In this candid interview with Raise the Line host Hillary Acer, Dymanus shares a wealth of wisdom about balancing studies, work and wellbeing gained during her years as a med student at Medical College of Georgia and her current residency in urology at Rush University Medical Center. A key for her was having a network of supporters outside of her professional circle to help her manage ulcerative colitis, a condition she was hesitant to disclose to colleagues and supervisors. “My friends and family were literally the ones on the ground calling my doctors to schedule appointments and following up when they didn't send medications to my pharmacy. I honestly could not have done it without them,” she shares. On a promising note, Dymanus believes more support is being made available within residency programs as recognition grows about the mental and physical health impacts that can result from the demanding, high stakes work involved. “The traditional thinking with residents and doctors is you need to be strong, you need to kind of suffer through this, but I think a lot of programs are now being more proactive, and they’re providing supportive resources for residents ahead of time.” Hillary and Dr. Dymanus also touch on her interests in medical device development, outcomes research, quality improvement, and global health inequities. You won’t want to miss this inspiring episode in our Next Gen Journeys series featuring fresh perspectives on education, medicine, and the future of healthcare.
Mentioned in this episode:
Rush University Medical Center
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Having a child with a complex illness can be especially challenging for parents because of differing opinions among providers about causes, symptoms and treatments for disorders such as long COVID and chronic Lyme. “A common theme I would hear from parents is that they really had to push their providers to consider Lyme. Sometimes they even had to beg for testing to be done because it just wasn't considered a possibility,” says Dr. Charlotte Mao, a pediatric infectious disease physician working with leading foundations in the Lyme disease and associated infections arena. Adding to challenge is that kids often have trouble explaining their symptoms, says Dr. Lael Yonker, a pediatric pulmonologist at Massachusetts General Hospital. “I think takes a lot of patience by the pediatrician, listening carefully to the parents and patient, and really trying to dig into what their symptoms actually mean.” Join host Raven Baxter of The Cohen Center for Recovery from Complex Chronic Illnesses at Mount Sinai as she draws out valuable guidance on how providers can work effectively with both children and parents during a journey laden with uncertainty. Key tips include having humility for the limits of your own knowledge, keeping an open mind for unexpected possibilities and having respect for what patients know about their own body. Don’t miss this wisdom drop from these deeply experienced pediatricians and researchers as our series on Post-Acute Infection Syndromes continues.
Mentioned in this episode:
Mount Sinai Health System
Steven & Alexandra Cohen Foundation
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“Helping patients with complex illnesses is a lot like rock climbing. You're looking for toe holds and finger grips that you can use to get from where you are to where this patient wants to be,” says Dr. Leo Galland, an internist and author who specializes in undiagnosed or difficult to treat illnesses. His fellow guest on this episode of Raise the Line, co-founder of the California Center for Functional Medicine Dr. Sunjya Schweig, agrees and says figuring out that next anchor point depends on taking the time to learn about all aspects of a patient’s life and lifestyle, and building a cooperative relationship with them. “Listening is the first therapeutic step,” he tells host Raven Baxter of The Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) at Mount Sinai. In this deeply informative conversation, both experts underscore that working in this realm requires moving past differential diagnosis and symptom management and persisting in the search for root causes. “You have to embrace the complexity and the individuality of illness. Thinking for yourself and always questioning is really important and, you know, being a real pain in the butt kind of person is what you've got to be,” adds Galland. This special episode is packed with valuable insights on the limits of testing, the role of disease triggers and mediators, the power of lifestyle changes and much more as our series on Post-Acute Infection Syndromes continues.
Mentioned in this episode:
Mount Sinai Health System
Steven & Alexandra Cohen Foundation
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One key theme in this episode of Raise the Line is that attention to details matters for both patients with post-acute infection syndromes and the clinicians helping them as they grapple with often debilitating symptoms caused by dysautonomia, cardiac complications and other disorders. For patients, it’s about paying close attention to their bodies and diet, and being intentional about their use of energy. For providers, it’s listening very carefully to patients as they describe their fatigue, pain, lightheadedness and other symptoms and keeping up with the latest research on treatments so there are options to offer if there’s little or no progress being made in physical therapy, which is sometimes the case. “Don't just assume therapy is gonna go smooth. It rarely goes smooth. So, have an answer for the patient who says, ‘I'm not feeling better, what should I try next,’” says Dr. David Putrino, director of the Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) at Mount Sinai. It’s also important to set expectations for patients who may think a few weeks of PT will resolve their issues, as is often the case with recovery from an injury. “What we're looking to do is reduce the number of flare-ups that happen, reduce the severity of those flare-ups, and ideally reach a point of symptom stability,” says Dr. Jenna Tosto, a leading expert in neurophysiological rehabilitation at Mount Sinai. To help patients understand the amount of progress happening, if any, host Dr. Raven Baxter, a long COVID patient herself, says keeping a daily journal and using fitness trackers can reveal important details. This expansive conversation includes valuable insights for patients and providers alike on breathwork, emotional regulation and other techniques to try during the search for improvement and recovery in complex chronic illnesses.
Mentioned in this episode:
Mount Sinai Health System
Steven & Alexandra Cohen Foundation
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We continue our Year of the Zebra focus on rare diseases today by exploring the ability of AI technology to aid in the diagnosis of rare and other conditions by analyzing the voice and speech of the patient. This approach is promising enough that the National Institutes of Health has invested in research projects to test its effectiveness, and the private sector is pursuing it as well, including the company Canary Speech whose technology can be trained to detect conditions that are traditionally difficult to identify, or those where early identification is crucial to treatment. “With just seconds of conversational speech, we can screen for multiple behavioral and cognitive conditions,” says Caitlyn Brooksby, Canary's vice president of Marketing and Strategic Partnership. One prime example she offers is a study on Huntington’s disease done in collaboration with Beth Israel Deaconess Medical Center in which more than a thousand features of speech were identified differentiating healthy patients from those with the disease. “Every ten seconds, we're looking at millions of data points, but we don't look at the words you say. We're looking at biomarkers within speech such as duration per word, word-per-second, bandwidth and contrast. It's really incredible what we can gather from speech alone,” she explains. Canary is in the second iteration of its Huntington’s model which is showing accuracy rates of 90% and above, and it recently added mild cognitive impairment, Alzheimer's, and Parkinson's disease to its offerings. Join host Lindsey Smith on this episode of Raise the Line to learn more about this promising approach to diagnosis.
Mentioned in this episode:
Canary Speech -
Exercise is good for you, except in very specific cases when it isn’t. One of the few examples, post-exertional malaise (PEM), is the subject of today’s Raise the Line episode in our series on post-acute infection syndromes produced in collaboration with the Cohen Center for Recovery from Complex Chronic Illnesses at Mt. Sinai. “The key to understanding PEM is that it's not just fatigue. It's really the worsening of symptoms or the onset of new symptoms after exercise,” says Dr. Rob Wust of Vrije University Amsterdam. His research group is one of several around the world now focused on this previously obscure phenomenon due to the prevalence of long COVID in which PEM is a nearly universal symptom. And while it’s good news that this debilitating affliction is receiving new attention, no clear picture of causes and treatments has yet emerged. In terms of suspects, the body’s energy suppliers, mitochondria, are a popular target, but while Wust’s team and others attempt to unravel the mysteries of mitochondrial dysfunction, millions of patients suffering with PEM need strategies to avoid exhaustion. In that regard, Dr. David Putrino of the Cohen Center says patients and clinicians alike need to take all use of bodily energy into account, not just obvious activities such as walking. “The brain uses a lot of energy, so cognitive exertion will cause crashes. Emotional exertion will cause crashes and so will digestion and even sweating.” Join host Raven Baxter of the Cohen Center as she explores what can be done for patients as the race to find better diagnostics and treatments for PEM continues in some of the world’s top scientific centers.
Mentioned in this episode:Mount Sinai Health System
Steven & Alexandra Cohen Foundation
Long COVID Physio
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It’s hard for many to believe a tick bite or case of COVID can lead to severe mental illness, but we’ll be hearing from someone on this episode of Raise the Line who lived through just that experience. Dr. Raven Baxter also happens to be the host of this special series on post-acute infection syndromes produced in collaboration with the Cohen Center for Recovery from Complex Chronic Illnesses at Mt. Sinai. While struggling with long COVID, Raven developed panic attacks and other mental health problems, and even though she explained to providers that she previously had no history of mental illness, there was reluctance to attribute the symptoms to her body’s reaction to SARS‑CoV‑2. Unfortunately, this is not surprising to Dr. Shannon Delaney, a psychiatrist whose patients share similar stories. “People who are going through this can be suffering a lot, not only because of their symptoms, but because of invalidation from the medical community,” says Delaney, who believes brain inflammation caused by immune system dysregulation can explain why mental health issues emerge in this context. While Raven’s other guest, Dr. Mike VanElzakker, concurs, his research at Massachusetts General Hospital and the PolyBio Research Foundation focuses on the vagus nerve as a contributing factor to symptoms of various types. “I would argue at least part of what people with these complex chronic illnesses are experiencing is an ongoing sickness response and that may be because there is a signal that's constantly bombarding the vagus nerve, which may be sensitized by inflammation.” This is an eye-opening look at mind-body connections that are challenging conventional wisdom.
Mentioned in this episode:
Mount Sinai Health System
Steven & Alexandra Cohen Foundation
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“I think education is very much of an artistic process. I love to think of this as kind of being in a museum. It's about curation of an experience,” says Alex Kendall who oversees the physician assistant training program at Emory University. As he takes on the role of director, Kendall’s background in art and anthropology give him an interesting perspective from which to build on and realize the program’s vision and mission, which are rooted in evidence-based education, leadership development, interprofessional education and creating patient-centered, community-oriented clinicians. Toward that end, one curated experience is participation in the longstanding Emory Farm Worker project in which students care for thousands of migrant workers from Florida, Georgia and other states. Among other things, it’s a great opportunity to deepen awareness of the social determinants of health and practice caring for diverse populations. Looking to the future, Kendall and colleagues are keen to prepare their students for growing trends that will impact their work as clinicians including team-based care, the aging of the population and the increase in climate-related health problems. “We ask ourselves what does the future of health and society look like in ten years and what is needed from physician assistants? Our job is to identify what medical education then needs to look like in order to meet those future challenges.” This expansive conversation with host Hillary Acer also touches on Emory’s cognitive apprenticeship curriculum, scaffolded learning, making primary care an easier choice of specialty and the growing interest in point of care ultrasound.
Mentioned in this episode:
Emory University School of Medicine PA Program
Emory Farm Worker Project
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