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. 2018 Aug;11(4):413-423.
doi: 10.1007/s40271-018-0298-4.

Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research

James D Harrison  1 , Wendy G Anderson  2 , Maureen Fagan  3 , Edmondo Robinson  4 , Jeffrey Schnipper  5 , Gina Symczak  6 , Catherine Hanson  7 , Martha B Carnie  3 , Jim Banta  6 , Sherry Chen  2 , Jonathan Duong  2 , Celene Wong  3 , Andrew D Auerbach  2
Affiliations

Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research

James D Harrison et al. Patient. 2018 Aug.

Abstract

Objective: The aim was to describe barriers to patient and family advisory council (PFAC) member engagement in research and strategies to support engagement in this context.

Methods: We formed a study team comprising patient advisors, researchers, physicians, and nurses. We then undertook a qualitative study using focus groups and interviews. We invited PFAC members, PFAC leaders, hospital leaders, and researchers from nine academic medical centers that are part of a hospital medicine research network to participate. All participants were asked a standard set of questions exploring the study question. We used content analysis to analyze data.

Results: Eighty PFAC members and other stakeholders (45 patient/caregiver members of PFACs, 12 PFAC leaders, 12 hospital leaders, 11 researchers) participated in eight focus and 19 individual interviews. We identified ten barriers to PFAC member engagement in research. Codes were organized into three categories: (1) individual PFAC member reluctance; (2) lack of skills and training; and (3) problems connecting with the right person at the right time. We identified ten strategies to support engagement. These were organized into four categories: (1) creating an environment where the PFAC members are making a genuine and unique contribution; (2) building community between PFAC members and researchers; (3) best practice activities for researchers to facilitate engagement; and (4) tools and training.

Conclusion: Barriers to engaging PFAC members in research include patients' negative perceptions of research and researchers' lack of training. Building community between PFAC members and researchers is a foundation for partnerships. There are shared training opportunities for PFAC members and researchers to build skills about research and research engagement.

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Conflict of interest statement

Conflict of interest All authors support patient stakeholder engagement in research and patient-centered care. JDH, WGA, MF, ER, JS, GS, CH, MBC, JB, CW, SC, JD and ADA have no other conflicts of interest to declare.

Figures

Fig. 1
Fig. 1
Participants and data collection approach. PFAC = patient and family advisory council
Fig. 2
Fig. 2
Codes and themes describing barriers and challenges to PFAC member engagement in research. PFAC = patient and family advisory council
Fig. 3
Fig. 3
Codes and themes describing opportunities and strategies to support PFAC member engagement in research. PFAC = patient and family advisory council
See this image and copyright information in PMC

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