Patient-Powered Research in Eosinophilic Diseases with Dr. Evan Dellon

In recent years, there has been a greater focus on infusing the patient voice in clinical research in the space of eosinophilic disorders. In this episode, co-hosts Dawn McCoy and Ryan Piansky discuss the shift toward patient-led research for eosinophilic diseases with Evan Dellon, MD, MPH. Dr. Dellon is an adult gastroenterologist with a clinical focus on eosinophilic gastrointestinal diseases (EGIDs) at the University of North Carolina at Chapel Hill. He also serves as a member of APFED's Health Sciences Advisory Council. Dr. Dellon's main research interests are the epidemiology, pathogenesis, diagnosis, treatment, and outcomes of EoE, as well as similar investigations into the other EGIDs. He is widely published in this area, and collaborates with investigators all over the world. Dr. Dellon highlights some of the different types of research in this field, the important role that patients play beyond just participating in clinical trials, and how patient engagement in research has evolved through the years. He also shares more about some of the trends in this area, and what we can expect in the future when it comes to patient involvement in clinical research. Tune in to find out more.   Key Takeaways: [0:52] Hosts Dawn McCoy and Ryan Piansky introduce themselves. [1:33] Ryan introduces the guest for this episode - Dr. Evan Dellon. [1:51] Dr. Dellon shares more about himself and the research he is involved in. [2:53] What are some ways patients are driving research in the eosinophil space to advance knowledge beyond trialing experimental drugs? [5:30] Patient participation in clinical trials is crucial in getting therapy approved, but when is patient input appropriate or just as critical? [8:37] There has been an increase in the number of survey interview opportunities for patients recently. How impactful is it for patients to participate in these types of projects? [13:33] How has patient engagement changed over the years, and how has that helped research? [15:51] Dr. Dellon explains more about the feasibility element of conducting research. [18:26] Who has a stake in research? Who are some of the key players impacted by research findings? [21:27] What are some ways that the healthcare field can improve patient engagement in research? What are the trends Dr. Dellon is seeing? [25:04] What does Dr. Dellon think the future of patient engagement in research will look like? [25:48] Dr. Dellon shares some final thoughts about patient engagement in research.   Mentioned in This Episode: American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Dr. Evan Dellon APFED's Health Sciences Advisory Council EGID Partners Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Patient-Centered Outcomes Research Institute (PCORI) Food and Drug Administration (FDA) IBD Partners   This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.