Engaging Patients for Research That Matters: IBD Partners

Abstract

The Project on Transparency and Technology for Better Health was established to conduct comparative case studies on platforms that empower patients through information to provide an inventory and typology of initiatives. This case study takes a look at IBD Partners, a research network connecting nearly 15,500 IBD patients with over 300 researchers. Patients can contribute their self-reported health data for research by filling out surveys on their health twice a year. This way, patient-generated data feeds into an extensive database that can be accessed by researchers to conduct longitudinal studies, to connect with patients for clinical trials and for prospective studies. Patients can also use the platform to suggest research questions and vote for the most interesting ideas, generating a truly patient-driven research agenda.