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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)

Arlene E Chung, Robert S Sandler, Millie D Long, Sean Ahrens, Jessica L Burris, Christopher F Martin, Kristen Anton, Amber Robb, Thomas P Caruso, Elizabeth L Jaeger, Wenli Chen, Marshall Clark, Kelly Myers, Angela Dobes, Michael D Kappelman
DOI: http://dx.doi.org/10.1093/jamia/ocv191 ocv191 First published online: 28 January 2016

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.

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