Launching PCORnet, a national patient-centered clinical research network

By R. Fleurence, L. Curtis, Robert M. Califf, R. Platt, J. Selby, Jeffrey S. Brown. JAMIA Journal of the American Medical Informatics Association, 2014

600 citations recorded by the source corpus.

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.

Subfields: Economics and Econometrics, General Health Professions, Public Health, Environmental and Occupational Health

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In Economics and Econometrics

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Citations in the corpus

• Electronic health records to facilitate clinical research (2016, methodology): “Ongoing projects, such as those conducted within the NIH Collaboratory and PCORnet [39, 41] in the United States or the Farr Institute of Health Informatics Research in Scotland, have demonstrated the feasibility of using EHRs for aspects of clinical research, particularly comparative effectiveness.”
• Creating Strategic Business Value from Big Data Analytics: A Research Framework (2018, background): “Examples of ambitious and exciting investments in BDA include PCORNet (the National Patient-Centered Clinical Research Network) [19], the U.S. Food and Drug Administration (FDA)’s Mini-Sentinel, and the American Society of Clinical Oncology’s CancerLinQ [47].”
• PheKB: a catalog and workflow for creating electronic phenotype algorithms for transportability (2016, methodology): “While many public algorithms have been developed by the eMERGE, the Mid-South Clinical Data Research Network Coronary Heart Disease algorithm is the third-most viewed algorithm, and was developed as part of PCORNet.(4) Of the top 20 locations that have viewed this algorithm, 15 are institutions that”
• Opportunities and challenges in developing risk prediction models with electronic health records data: a systematic review (2017, background): “Efforts such as PCORNet 128 that allow for creation of linked hospital networks may help facilitate multicenter analyses needed to create and assess more broadly generalizable EHR-based risk scores.”