title: Launching PCORnet, a national patient-centered clinical research network.
abstract: The Patient-Centered Outcomes Research Institute (PCORI) has launched PCORnet, a major initiative to support an effective, sustainable national research infrastructure that will advance the use of electronic health data in comparative effectiveness research (CER) and other types of research. In December 2013, PCORI's board of governors funded 11 clinical data research networks (CDRNs) and 18 patient-powered research networks (PPRNs) for a period of 18 months. CDRNs are based on the electronic health records and other electronic sources of very large populations receiving healthcare within integrated or networked delivery systems. PPRNs are built primarily by communities of motivated patients, forming partnerships with researchers. These patients intend to participate in clinical research, by generating questions, sharing data, volunteering for interventional trials, and interpreting and disseminating results. Rapidly building a new national resource to facilitate a large-scale, patient-centered CER is associated with a number of technical, regulatory, and organizational challenges, which are described here.
authors.affiliation: Patient-Centered Outcomes Research Institute, Washington, DC, USA.
authors.forename: Rachael L
authors.initials: RL
authors.lastname: Fleurence
authors.affiliation: Duke Clinical Research Institute, Durham, North Carolina, USA Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA.
authors.forename: Lesley H
authors.initials: LH
authors.lastname: Curtis
authors.affiliation: Division of Cardiology, Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA Duke Translational Medicine Institute, Duke University, Durham, North Carolina, USA.
authors.forename: Robert M
authors.initials: RM
authors.lastname: Califf
authors.affiliation: Department of Population Medicine, Harvard Pilgrim Health Care Institute, Boston, Massachusetts, USA Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: Richard
authors.initials: R
authors.lastname: Platt
authors.affiliation: Patient-Centered Outcomes Research Institute, Washington, DC, USA.
authors.forename: Joe V
authors.initials: JV
authors.lastname: Selby
authors.affiliation: Department of Population Medicine, Harvard Pilgrim Health Care Institute, Boston, Massachusetts, USA Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: Jeffrey S
authors.initials: JS
authors.lastname: Brown
mesh_terms: D003195:Computer Communication Networks; D057286:Electronic Health Records / Q000458:organization & administration; D006801:Humans; D017063:Outcome Assessment, Health Care / Q000458:organization & administration*; D018802:Patient-Centered Care; D014481:United States
keywords: clinical data research networks; comparative effectiveness research; distributed databases; patient-centered outcomes research institute; patient-powered research networks