IBConnect: Placing patient data at the heart of online communities

Personal Health Records (PHRs), electronic records of health-related information of an individual created and managed by the individual, represent an exciting opportunity for designers and the patients they serve. Tools that collect, analyze, and share personal health data may prove vital to the chronically ill, a population whose health is not managed by doctors but by patients themselves. However, existing PHRs mainly serve as repositories of static information. Less explored is the idea of a data-driven PHR, centered within an online patient community, enabling chronically ill patients to connect and share relevant knowledge.

This thesis project explores design opportunities for next-generation personal health records. The result is IBConnect, a digital personal health record platform for patients with Inflammatory Bowel Disease. By navigating data within a personal health record as a means to explore online community knowledge, patients using IBConnect can manage their individualized illness experience by discovering actionable, relevant and contextualized knowledge. In turn, patients are encouraged to track and contribute more to the IBConnect community enabling access to new knowledge, a resource highly valued by patients.