Community Organization Perspectives on Improving Clinical Trial Initiatives

Tina Aswani-Omprakash is a Crohn’s patient and award-winning patient leader and health advocate based out of New York City. She has had Crohn’s Disease for 16 years and has had numerous surgeries. Ms Aswani-Omprakash maintains a blog and advocacy platform called Own Your Crohn’s (http://ownyourcrohns.com) and recently co-founded IBDesis, a community for South Asians living with inflammatory bowel disease (IBD). She has now merged IBDesis into a patient-clinician non-profit initiative called South Asian IBD Alliance (SAIA). Her overarching aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help diverse groups of patients own their ailments to live fuller, happier lives.Via her writing, lobbying, social media advocacy and speaking engagements, she spearheads public health causes, including those proposing research for and creating awareness for IBD, life-saving ostomy surgery, gastroparesis, fistulizing disease and initiatives supporting health equity for women and racial, ethnic & sexual minorities.Ms Aswani-Omprakash is pursuing her Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Additionally, she has spoken at many premier GI conferences worldwide and has co-authored four research papers and two guidebooks on IBD care. Ms Aswani-Omprakash does freelance work as a patient advisor for non-profits as well as ostomy manufacturers, in addition to pharmaceutical and digital health companies. Her aim is to help companies recognize disparities and unmet needs in minority health populations.The Crohn’s & Colitis Foundation recognized Ms Aswani-Omprakash in 2021 for her phenomenal leadership and powerful impact on the IBD community with the Above & Beyond Volunteer Award. Ms Aswani-Omprakash’s blog was also recognized as a 2020 Best Blog by Healthline and she was awarded the 2019 Healio Gastroenterology Disruptive Innovator Award by the American College of Gastroenterology for moving the needle on GI care for patients.

Ashish Rishi is the founder and CEO of Unwritten Health and a member of the Scientific Advisory Board for IHI READI, a Horizon Europe initiative on health equity and research infrastructure.His career has been dedicated to making healthcare more inclusive, not as a moral cause, but as a practical necessity. Because systems that exclude people from their data don't just fail those people. They fail everyone who relies on the decisions that data shapes.His work starts with a question most systems never ask: who isn't in the data?Ashish has spent his career examining how healthcare decisions break, not at the point of failure, but long before it. When the wrong voices shape the evidence. When engagement looks thorough but isn't.At Unwritten Health, he's building something to change that, turning diverse lived experience into decision-ready data that helps life sciences see not just what happened, but where understanding eroded and trust was lost long before outcomes told the story.He doesn't frame this as advocacy. He frames it as an evidence problem. A design problem. One with real consequences for research, innovation, policy, and care delivery.Based in Manchester, UK, Ashish works with healthcare and life sciences organisations who are beginning to ask whether their data truly reflects who it needs to, and what it costs when it doesn't.