title: Patient-powered research networks aim to improve patient care and health research.
abstract: The era of big data, loosely defined as the development and analysis of large or complex data sets, brings new opportunities to empower patients and their families to generate, collect, and use their health information for both clinical and research purposes. In 2013 the Patient-Centered Outcomes Research Institute launched a large national research network, PCORnet, that includes both clinical and patient-powered research networks. This article describes these networks, their potential uses, and the challenges they face. The networks are engaging patients, family members, and caregivers in four key ways: contributing data securely, with privacy protected; including diverse and representative groups of patients in research; prioritizing research questions, participating in research, and disseminating results; and participating in the leadership and governance of patient-powered research networks. If technical, regulatory, and organizational challenges can be overcome, PCORnet will allow research to be conducted more efficiently and cost-effectively and results to be disseminated quickly back to patients, clinicians, and delivery systems to improve patient health.
authors.affiliation: Rachael L. Fleurence (rfleurence@pcori.org) is program director at the Patient-Centered Outcomes Research Institute (PCORI), in Washington, D.C.
authors.forename: Rachael L
authors.initials: RL
authors.lastname: Fleurence
authors.affiliation: Anne C. Beal is senior vice president and chief patient officer at Sanofi, in Bridgewater, New Jersey.
authors.forename: Anne C
authors.initials: AC
authors.lastname: Beal
authors.affiliation: Susan E. Sheridan is director of patient engagement at PCORI.
authors.forename: Susan E
authors.initials: SE
authors.lastname: Sheridan
authors.affiliation: Lorraine B. Johnson is executive director of LymeDisease.org, in Chico, California, and cochair of the Steering Committee of Consumers United for Evidence-Based Medicine.
authors.forename: Lorraine B
authors.initials: LB
authors.lastname: Johnson
authors.affiliation: Joe V. Selby is executive director of PCORI.
authors.forename: Joe V
authors.initials: JV
authors.lastname: Selby
mesh_terms: D035843:Biomedical Research; D003195:Computer Communication Networks / Q000458:organization & administration*; D016494:Computer Security; D066264:Datasets as Topic; D057286:Electronic Health Records / Q000458:organization & administration; D019317:Evidence-Based Medicine; D006801:Humans; D008490:Medical Informatics; D017063:Outcome Assessment, Health Care / Q000458:organization & administration; D010358:Patient Participation; D018802:Patient-Centered Care
keywords: Consumer Issues; Evidence-Based Medicine; Information Technology; Medicine/Clinical Issues; Research And Technology