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

James D. Harrison (), Wendy G. Anderson, Maureen Fagan, Edmondo Robinson, Jeffrey Schnipper, Gina Symczak, Catherine Hanson, Martha B. Carnie, Jim Banta, Sherry Chen, Jonathan Duong, Celene Wong and Andrew D. Auerbach
Additional contact information
James D. Harrison: University of California San Francisco
Wendy G. Anderson: University of California San Francisco
Maureen Fagan: Center for Patients and Families, Brigham and Women’s Hospital
Edmondo Robinson: Christiana Care Health System
Jeffrey Schnipper: Brigham and Women’s Hospital
Gina Symczak: University of California San Francisco
Catherine Hanson: University of Michigan Local Patient and Stakeholder Council
Martha B. Carnie: Center for Patients and Families, Brigham and Women’s Hospital
Jim Banta: University of California San Francisco
Sherry Chen: University of California San Francisco
Jonathan Duong: University of California San Francisco
Celene Wong: Center for Patients and Families, Brigham and Women’s Hospital
Andrew D. Auerbach: University of California San Francisco

The Patient: Patient-Centered Outcomes Research, 2018, vol. 11, issue 4, No 5, 413-423

Abstract: 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.

Date: 2018
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DOI: 10.1007/s40271-018-0298-4

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