Raise the Line

One challenge in developing treatments for rare diseases is finding enough people with the condition to mount valid clinical trials.  Databases that contain diagnostic codes for specific conditions can help, but those miss people who may have the condition but have yet to be conclusively diagnosed.  That’s where Verana Health comes in, a digital health company that uses AI to mine its data network of more than 20,000 healthcare providers and the clinic notes they make about patient encounters. “If you wanted to find somebody with a specific genetic defect, or a specific condition for which a diagnostic code doesn't even exist, clinic notes represent really the only place you could discover that information,” explains Dr. Michael Mbagwu, an ophthalmologist and Verana’s Senior Medical Director. Verana partners with the American Academy of Ophthalmology, the American Academy of Neurology and the American Urologic Association to manage their clinical registries which were built to improve quality of care, answer research questions and help physicians report quality metrics. Join host Michael Carrese for an exploration of the ways medicine is being changed by the ever-growing amount of data available and the new technologies which allow clinicians and others to analyze and use all of that information. “Some of the things that we just assumed were never possible or were kind of hopeless endeavors are now possible for the first time thanks to AI.” 

Mentioned in this episode: https://www.veranahealth.com/

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We've heard many stories on Raise the Line about patients and their family members who, upon getting a rare disease diagnosis, build a non-profit organization from scratch to boost advocacy and research for the condition in question. This is obviously a pretty big hill to climb for people with no background in such things. Well, today we're going to learn about Beacon for Rare Diseases, a UK non-profit designed to provide the expertise and support needed to get a rare disease patient group off the ground, and to connect these groups with each other for the purpose of mutual education and support. “What we've seen is that people forming and building patient organizations can help really trigger a new community around that, and help drive the field forward,” Beacon CEO Dr. Rick Thompson tells host Shiv Gaglani. “What we want to do as an organization is help those patient groups form, to grow, and to professionalize their work.” Tune in to find out how Dr. Thompson’s background in evolutionary biology, research and education impacts his work at Beacon, why rare diseases should be approached in the same way as cancer, and his interest in repurposing existing drugs for use in treating rare diseases. 

Mentioned in this episode:  https://www.rarebeacon.org/

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“It is my deepest wish for all of my students to find me as a mentor and a coach,” says Beth Hendricks, RN, MSN and assistant professor at New Mexico State University School of Nursing. That can be traced back in part to a nursing educator early in her career who took that approach and built her confidence. Being devoted to paying that forward is one reason Hendricks is the winner of the 2022 Osmosis Raise The Line Faculty Awards in the RN-Nurse Practitioner category. Her student nominators describe her as both empathetic and driven to see them succeed, which is a deliberate balance Hendricks tries to strike. “Having their backs but also challenging them is the best method for connecting with students,” she tells host Michael Carrese. Check out this insightful conversation on how to motivate students to fight through “imposter syndrome,” the importance of learning to think like a nurse, and why she encourages students to find their unique learning style among many other tips for educators. 

Mentioned in this episode: www.osmosis.org/faculty-awards

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We've learned quite a bit on Raise the Line about at-home monitoring technology for chronic disease management, but on this episode we're going to explore the use of tech for a different aspect of the patient experience: post-surgical care. It’s a significant issue because hospitals are incentivized to discharge patients as soon as possible, leaving many to recover at home with varying degrees of support. “The whole postoperative period is a huge black box of missing information. We really don't know how patients are doing after their surgery because we’re not capturing the 24-7 experience the patient is living through,” says Dr. Sanjeev Suratwala, an orthopedic spine surgeon who co-founded Recuperet Health to fill that information gap. He tapped software engineer and management consultant Gary Arora to develop Recuperet’s technology platform with the aim of keeping it simple for users. “You simply log in with your credentials. It's like watching Netflix on your browser. You don't need to download or install anything,” he tells host Michael Carrese. Patients wear Fitbits that track vital signs, and the system is designed to send alerts to providers -- and a patient-designated caretaker - if something seems concerning.  Tune in to learn how Recuperet is leveraging AI and gamification as part of its approach, and how this solution can be broadened to other specialties beyond orthopedics. 

Mentioned in this episode: https://recuperet.io

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“I noticed early on in my academic career that the traditional methods of engagement and the lecture was no longer working for millennials and Gen Z, which is the first generation to completely grow up being immersed in technology,” says Dr. Nicolene “Nikki” Lottering of Bond University in Queensland. That set the assistant professor of anatomy and forensic anthropologist on the path of determining how to use technology effectively without going too far. “For me, it's about the responsible use of technology to meet students halfway and harness that power to engage them and make them excited about what they're learning.” This thoughtful approach is one of the reasons Lottering is the winner of the 2022 Osmosis Raise the Line Faculty Award in the Anatomy and Physiology category. Another, according to her student nominators, is her compassion for her students. This became particularly pronounced during COVID which presented enormous challenges to educators and students alike. “I believe good education comes from a place of genuinely caring about your students,” she tells host Michael Carrese. “We can learn as a community and we can, through learning, find coping strategies as well. It's not always about the content, but it's actually about the community.” Don’t miss this inspiring conversation from an educator with many insights on how to connect students to their learning and to each other. 

Mentioned in this episode: www.Osmosis.org/faculty-awards

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Perhaps the most noteworthy element of Osmosis from Elsevier’s Year of the Zebra educational initiative is the new, open-access, peer-reviewed journal Rare. Open Research in Rare Diseases.It joins Elsevier's leading collection of 2,500 publications in science and medicine. Rare is an open journal in multiple senses because, in an unusual step, contributions are being welcomed from patients as well as scientists. “We need the patient's voice to find out what their needs and challenges are every day,” says editor-in-chief, Dr. Wendy van Zelst-Stams. “We really want to have both a clinical impact on rare disease patients and an impact on their well-being in daily life.” Dr. van Zelst-Stams is taking on this new role in addition to her work leading the Clinical Genetics Section in the Department of Human Genetics of the Radboud University Medical Center and the Dutch Society of Clinical Genetics. In this enlightening conversation with host Shiv Gaglani, you’ll learn about Europe’s efforts to improve care for rare disease patients, the “DNA-first” approach her program takes to reduce the diagnostic odyssey, and the types of content that will be featured in this multidisciplinary scientific journal. 

Mentioned in this episode: https://www.sciencedirect.com/journal/rare

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“Even my mother always told me that my biggest strength is my explanation capability,” says Dr. Kishore Banerjee, the winner of the 2022 Osmosis Raise the Line Faculty Awards in the Medicine - Osteopathy category. It’s a skill the pathologist and educator has continued to hone over many years of teaching. “If you can create analogies and compare things with a real-life experience, then it becomes very easy for the student.” Better yet, Dr. Banerjee tells host Michael Carrese, is the prospect of enhancing the images he is trying to create for students using new technologies. “If we can create an immersive experience for students using the metaverse or artificial intelligence, that would be wonderful.” Throughout the podcast, Dr. Banerjee emphasizes the importance of making the learning process an enjoyable experience, one that students look forward to, which aligns him perfectly with the core Osmosis value of Spread Joy. “If the learning is happening in a fun environment, only then can you learn it properly.” By the end of this delightful conversation, you’ll understand why Dr. Banerjee was selected as a winner out of the thousands of nominations Osmosis received from nearly 400 institutions worldwide. 

Mentioned in this episode: www.osmosis.org/faculty-awards

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Join us on this special episode of Raise the Line as we speak with Theodosia Adanu, Principal Librarian and Head at University of Ghana and winner of the 2022 Raise the Line Faculty Award in the Librarian category. When host Lindsey Smith asked Adanu which of the Osmosis values she resonated with most, her response was immediate. “When I think of the heart, I think of passion. I think for anyone to be able to make a difference, you ought to be passionate about things, and this is one thing I'm passionate about.”  According to her students, Adanu’s unwavering drive to affect change and encourage them to succeed are just two of the reasons she was nominated and chosen for the award. In her conversation with Lindsey, Adanu describes the parts of the job she loves most, including helping students discover and learn new things.  She also touches on concerns about information literacy. “I do my best to make sure that everybody knows about it and is practicing the tenets of information literacy. That's a gap I'd like to see through.”

Mentioned in this episode: www.osmosis.org/faculty-awards

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast