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