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.

Personal discovery in diabetes self-management: Discovering cause and effect using self-monitoring data

“…Parallel to this increased reliance on clinical and genetic data, self-monitoring data are increasingly seen as an important contributor to improvements in both medical care and self-management [15,16]. Self-monitoring has long been accepted as standard practice in a variety of chronic diseases and conditions [17].…”

Engagement, Empowerment and Patient Generated Health Data

“…Improved health Outcomes Tang et al 2006;Hanu-Cernat 2009;Pourdanesh et al 2012;Aschettino et al 2015;Chung et al 2016;Murthy & Wood 2015;Petersen et al 2015;Wood et al 2015. Experts speculate that there is a link between the collection and use of patient generated health data and patient engagement. Current research shows it can improve physiological health outcomes and psychological outcomes (Ahern, et al, 2011;Huba & Zhang, 2012;Shapiro, 2012;Van Doornik, 2013;Washington, 2014) described in the next section of this thesis.…”

“…Yet in the exploratory study by Huba and Zhang (2012) where 21 medical practitioners from 16 disciplines were interviewed about the use and issues of patient generated health data, findings showed improved patient-provider communication and an enhanced ability for patients to recognise their own illness. Overall the biggest area of concern for clinicians was the legal and regulatory issues associated with the data including data ownership (Petersen & DeMuro, 2015) reimbursement for services (Chung et al, 2016) and misdiagnosis Wolf et al, 2013).…”

“…It is in this context that patient generated data emerges as a signature of the engaged, proactive patient. Chung et al (2016) worked co-creatively with the Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network to accelerate research in inflammatory bowel diseases by creating a vibrant patient driven online community. They aimed to provide the: technical infrastructure, patient governance, and patient-driven functionality needed to : 1) identify, prioritize, and undertake a patient-centred research agenda through sharing persongenerated health data; 2) develop and test patient and provider-focused tools that utilize individual patient data to improve health behaviours and inform health care decisions and, ultimately, outcomes; and 3) rapidly disseminate new knowledge to patients, enabling them to improve their health.…”

“…However patients are now mobilising online, establishing research agendas (Chung, et al, 2016) and in clinical research the data can be used to "understand mechanisms of action of therapeutic strategies, to understanding and predicting treatment-related toxicity, to designing interventions to improve adherence and clinical outcomes" (Wood, Bennett, & Basch, 2015, p. 1018. Patients were comfortable sharing PGHD with healthcare practitioners, providing adequate consent is obtained (Creighton, Alderson, Brown, & Minto, 2002).…”