Bass Connections Project – Crowdsourced Health: Online Patient Communities Enabling Health Innovation

Term: Fall 2020-Spring 2021

Instructors: Dr. Aaron Dinin & Henry Copeland

Project Description:

While cutting-edge research is generating new and innovative solutions for various diseases, there is a disconnect between the rapid pace of research and actual implementation by physicians. Thus, numerous online communities have been established by patients with rare conditions to pool knowledge, provide a support network, and ask for resources. This project aims to make the connection between patients and potentially life-saving research by catalogging online patient communities within various social media platforms. An extensive catalog of such communities open to the public could allow for rapid, efficient dissemination of transformative research regarding new treatments to patient populations. Patients could further utilize these online communities to lobby for attention and resources to actually gain information and access to such treatments. Additionally, this catalog could be a valuable resource for those with particularly rare conditions to find people who share their disorder, providing invaluable mental, emotional, and informational support in the fight against the disorder. Interviews will also be conducted of patients in these online health communities to identify the ways in which being part of a community has helped, or hurt, their ability to live with a disease.