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J Am Med Inform Assoc. 2016 May;23(3):485-90. doi: 10.1093/jamia/ocv191. Epub 2016 Jan 28.

Harnessing person-generated health data to accelerate patient-centered outcomes research: the Crohn's and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners).

Author information

1
Department of Pediatrics, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA Department of Internal Medicine, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA Carolina Health Informatics Program, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA arlene_chung@med.unc.edu.
2
Department of Internal Medicine, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
3
Crohnology, San Francisco, CA, USA.
4
Vanderbilt University School of Medicine (PCORI Representative, CCFA Partners Patient Governing Committee), Nashville TN, USA.
5
Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
6
Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA White River Computing, LLC, Irvington, NY, USA.
7
School of Information and Library Science, University of North Carolina, Chapel Hill, NC USA.
8
Atomo, Inc., Austin, TX, USA.
9
Crohn's and Colitis Foundation of America, New York, NY, USA.
10
Department of Pediatrics, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.

Abstract

The Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network (PPRN) seeks to advance and accelerate comparative effectiveness and translational research in inflammatory bowel diseases (IBDs). Our IBD-focused PCORnet PPRN has been designed to overcome the major obstacles that have limited patient-centered outcomes research in IBD by providing the technical infrastructure, patient governance, and patient-driven functionality needed to: 1) identify, prioritize, and undertake a patient-centered research agenda through sharing person-generated health data; 2) develop and test patient and provider-focused tools that utilize individual patient data to improve health behaviors and inform health care decisions and, ultimately, outcomes; and 3) rapidly disseminate new knowledge to patients, enabling them to improve their health. The Crohn's and Colitis Foundation of America Partners PPRN has fostered the development of a community of citizen scientists in IBD; created a portal that will recruit, retain, and engage members and encourage partnerships with external scientists; and produced an efficient infrastructure for identifying, screening, and contacting network members for participation in research.

KEYWORDS:

PGHD; patient engagement; patient-centered outcomes research; patient-reported outcomes; person-generated health data; wearables

PMID:
26911821
PMCID:
PMC4901381
DOI:
10.1093/jamia/ocv191
[Indexed for MEDLINE]
Free PMC Article

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