Patient informed governance of distributed research networks: results and discussion from six patient focus groups

Understanding how to govern emerging distributed research networks is essential to their success. Distributed research networks aggregate patient medical data from many institutions leaving data within the local provider security system. While much is known about patients' views on secondary medical research, little is known about their views on governance of research networks. We conducted six focus groups with patients from three medical centers across the U.S. to understand their perspectives on privacy, consent, and ethical concerns of sharing their data as part of research networks. Participants positively endorsed sharing their health data with these networks believing that doing so could advance healthcare knowledge. However, patients expressed several concerns regarding security and broader ethical issues such as commercialism, public benefit, and social responsibility. We suggest that network governance guidelines move beyond strict technical requirements and address wider socio-ethical concerns by fully including patients in governance processes.