My name is Dan Sharp and I am an Inflammatory Bowel Disease (IBD) patient, advocate, and patient med expert. I have lived with Crohn’s disease for nearly my entire life, having been diagnosed as a child. I have been actively involved in IBD and chronic illness advocacy for over 6 years, and officially launched DanSharpIBD.org on March 1, 2015.
As an advocate, I seek to bridge the gap between patient experience and clinician expertise. To this end, I have served as a patient representative to medical institutions, industry groups, and healthcare nonprofits; I also work through various means to disseminate up-to-date and relevant medical information in a language that is accessible to patients and caregivers. I am a regular attendee and social media influencer at major gastroenterology and IBD-related medical meetings (e.g. Advances in IBD and Digestive Disease Week), where I report on the latest information (with a particular focus on that which is most relevant to patients).
I’m very interested in the way accurate information, when communicated effectively, can lead to increased health literacy, better decision-making, improved patient activation, improved self-advocacy skills, and ultimately better outcomes in patients. On the flip side, I’ve seen the way that misinformation can lead to patients making decisions that ultimately cause them harm. A major passion of mine is to help patients differentiate between accurate information and misleading or inaccurate information.
Life with IBD can be be extremely difficult for anyone. However, children with IBD face a lot of profoundly difficult challenges that may be hard to comprehend for anyone who hasn’t lived through it. My own experience as a pediatric Crohn’s patient ranged from difficult to nightmarish, and I’d love nothing more than for kids with IBD now to not face the same struggles I went through. One of the most rewarding things I’ve done as an adult is volunteer at the Crohn’s & Colitis Foundation’s Camp Oasis, a week-long summer camp for kids with Inflammatory Bowel Disease (Crohn’s disease and ulcerative colitis). I volunteered for four years, filling various roles at both the Wisconsin and Michigan Camp Oasis locations, including camp counselor, LIT (leaders-in-training) program co-coordinator, and camp coordinator (assistant to the camp director).
I am very fortunate for all of the opportunities I’ve had in my life as an IBD advocate. In addition to supporting, educating, and advocating for IBD patients of all ages:
- I have provided advising/consulting services to various IBD-related medical institutions.
- I serve on the Patient Advisory boards of leading IBD centers in the United States.
- I am a consultant and contributor to the IBD Social Circle, which organizes various IBD patient chats and outreach events.
- I have provided volunteer fund-raising, member support, and outreach services for IBD-related non-profits.
- I am a patient representative for The Crohn’s & Colitis Foundation’s Qorus working group.
- I am a member of the planning committee for an upcoming national IBD patient education event.
- I have helped organize and lead various IBD patient meetup events, and am co-founder of ‘Gut Over Here – the coolest IBD meetups in town’.
I have spoken at a variety of events across the U.S. and abroad, including patient education events and medical meetings. Some of the topics I have had the pleasure of speaking on include:
- Alternative medicine in IBD
- Patient involvement in the drug development process
- Increasing patient interest in clinical trials (for clinical researchers)
- What patients learn about IBD on the internet
- Advocating for yourself or a loved one in a healthcare setting
- Acceptance in IBD
- Life with IBD (for non-patients)
I was featured, alongside Sara Ringer and Dr. David Rubin, in the Nature Outlook video “Bowel disease in the Internet age”.
In addition to publishing my own work, my perspective/writing has been featured in other publications, such as Healio Gastroenterology:
Patient Perspective with Dan Sharp (On insurance denials and treatment delays in IBD), excerpts of which were included in this cover story from April, 2018: Payer-Provider Divide Delays Care for IBD Patients.