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

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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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