Evidence Library

Title: Implementing a pragmatic framework for authentic patient-researcher partnerships in clinical research
Author: Fagan M B; Morrison C R C; Wong C; Carnie M B; Gabbai-Saldate P
Date Published: 2016
Reference: Journal of Comparative Effectiveness Research 5, 3, 297-308
Are service users or carers authors: No/Not Known

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).

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Categories: public health
Identifying topics, prioritising and commissioning
Designing research
Managing research
Undertaking research
Analysing and interpreting
Writing up and disseminating
Evaluating
journal article
Recruitment
Implementation and change
lessons from direct experience of involvement

Date Entered: 2018/09/19

Date Edited: 2018/09/19

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