title: 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).
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.
authors.affiliation: 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.
authors.forename: Arlene E
authors.initials: AE
authors.lastname: Chung
authors.affiliation: 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.
authors.forename: Robert S
authors.initials: RS
authors.lastname: Sandler
authors.affiliation: 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.
authors.forename: Millie D
authors.initials: MD
authors.lastname: Long
authors.affiliation: Crohnology, San Francisco, CA, USA.
authors.forename: Sean
authors.initials: S
authors.lastname: Ahrens
authors.affiliation: Vanderbilt University School of Medicine (PCORI Representative, CCFA Partners Patient Governing Committee), Nashville TN, USA.
authors.forename: Jessica L
authors.initials: JL
authors.lastname: Burris
authors.affiliation: Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
authors.forename: Christopher F
authors.initials: CF
authors.lastname: Martin
authors.affiliation: 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.
authors.forename: Kristen
authors.initials: K
authors.lastname: Anton
authors.affiliation: Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
authors.forename: Amber
authors.initials: A
authors.lastname: Robb
authors.affiliation: School of Information and Library Science, University of North Carolina, Chapel Hill, NC USA.
authors.forename: Thomas P
authors.initials: TP
authors.lastname: Caruso
authors.affiliation: Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Jaeger
authors.affiliation: Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
authors.forename: Wenli
authors.initials: W
authors.lastname: Chen
authors.affiliation: Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
authors.forename: Marshall
authors.initials: M
authors.lastname: Clark
authors.affiliation: Atomo, Inc., Austin, TX, USA.
authors.forename: Kelly
authors.initials: K
authors.lastname: Myers
authors.affiliation: Crohn's and Colitis Foundation of America, New York, NY, USA.
authors.forename: Angela
authors.initials: A
authors.lastname: Dobes
authors.affiliation: 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.
authors.forename: Michael D
authors.initials: MD
authors.lastname: Kappelman
mesh_terms: D000328:Adult; D000368:Aged; D003093:Colitis, Ulcerative; D003424:Crohn Disease; D003625:Data Collection / Q000379:methods*; D005260:Female; D006306:Health Surveys; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D008297:Male; D008875:Middle Aged; D008991:Monitoring, Physiologic / Q000379:methods*; D063868:Patient Outcome Assessment; D010358:Patient Participation; D057566:Self Report; D017216:Telemedicine / Q000295:instrumentation; D014481:United States; D000076251:Wearable Electronic Devices; D055815:Young Adult
keywords: PGHD; patient engagement; patient-centered outcomes research; patient-reported outcomes; person-generated health data; wearables