Implementing a pragmatic framework for authentic patient–researcher partnerships in clinical research. (May 2016)

• Record Type: Journal Article
• Authors: Fagan, Maureen B; Morrison, Constance RC; Wong, Celene; Carnie, Martha B; Gabbai-Saldate, Paulette
• Is Part Of: Journal of comparative effectiveness research. Volume 5:Number 3(2016)
• Page Start: 297
• Page End: 308
• Publication Date: 2016-05
• Subjects: patient-centered care -- patient-centered outcomes research -- patient engagement; Medical care -- Research -- Periodicals; Medical care -- Research -- Evaluation -- Periodicals; Medical care -- Decision making -- Periodicals; Evidence-based medicine -- Periodicals; Medicine, Comparative -- Periodicals; 362.1072
• DOI: 10.2217/cer-2015-0023
• Languages: English
• ISSNs: 2042-6305

Abstract

In response to the creation of the Patient-Centered Outcomes Research Institute in 2010, researchers have begun to incorporate patient and family stakeholders into the research process as equal partners, bringing their unique perspectives and experiences to the table. Nonetheless, there is a dearth of literature around how best to engage patients and families and many barriers to doing so effectively. This paper outlines a pragmatic framework of collaborative engagement and partnership between research investigators and patient and family advisors from existing patient and family advisory councils (PFACs) at an academic medical center. This framework includes the role for each party throughout the clinical research process (launch, hypothesis, specific aims, measures/methods, results, interpretations/recommendation and dissemination).