Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research
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.
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.
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.
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.
We would like to thank all stakeholders who participated in interviews and focus groups. Special thanks to all the patient partners for their time and for sharing their perspectives. Additional thanks for Tweedie Gaines, Ann-Marie Baker, Karen Anderson, Jason Selinger, Joanna Laffrey, and Teri Rose for assistance in organizing the focus groups. The statements presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.
JDH, WGA, MF, ER, JS, GS, CH, MBC, JB, and ADA contributed to the concept, study design, study implementation, data collection, data analysis/interpretation and manuscript preparation. CW contributed to study implementation, data collection, data analysis/interpretation and manuscript preparation. SC and JD were involved in the data analysis/interpretation and manuscript preparation.
This study was funded by a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (Harrison #3455).
Compliance with Ethical Standards
This study was reviewed and approved by the University of California San Francisco (UCSF), Brigham & Women’s Hospital (BWH), and Christiana Care Health System (CCHS) Committees on Human Research.
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.
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