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Patient and Family Advisory Councils for Research

Recruiting and Supporting Members From Diverse and Hard-to-Reach Communities

Harrison, James D. PhD, MPH; Anderson, Wendy G. MD, MPH; Fagan, Maureen DNP, WHNP-BC, FNP-BC; Robinson, Edmondo MD, MBA, FACP; Schnipper, Jeffrey MD, MPH; Symczak, Gina; Carnie, Martha B.; Hanson, Catherine; Banta, Jim; Chen, Sherry MPA; Duong, Jonathan MD; Wong, Celene MHA; Auerbach, Andrew D. MD, MPH

JONA: The Journal of Nursing Administration: October 2019 - Volume 49 - Issue 10 - p 473–479
doi: 10.1097/NNA.0000000000000790

OBJECTIVE To describe strategies to recruit and support members from hard-to-reach groups on research-focused Patient and Family Advisory Councils (PFACs).

BACKGROUND Ensuring diverse representation of members of research PFACs is challenging, and few studies have given attention to addressing this problem.

METHODS A qualitative study was conducted using 8 focus groups and 19 interviews with 80 PFAC members and leaders, hospital leaders, and researchers.

RESULTS Recruitment recommendations were: 1) utilizing existing networks; 2) going out to the community; 3) accessing outpatient clinics; and 4) using social media. Strategies to support inclusion were: 1) culturally appropriate communication methods; 2) building a sense of community between PFAC members; 3) equalizing roles between community members/leaders; 4) having a diverse PFAC leadership team; and 5) setting transparent expectations for PFAC membership.

CONCLUSION Increasing the diversity of research PFACs is a priority, and it is important to determine how best to engage groups that have been traditionally underrepresented.

Author Affiliations: Assistant Professors (Drs Harrison and Duong), Associate Professor (Dr Anderson), Professor (Dr Auerbach), and Project Manager (Ms Chen), Division of Hospital Medicine, University of California San Francisco; Chief Experience Officer (Dr Fagan) and Director of Patient and Family Advisory Councils (Ms Hanson), University of Miami Health System, Florida; Chief Transformation Officer and Vice President (Dr Robinson), Christiana Care Health System, Wilmington, Delaware; Associate Professor (Dr Schnipper), Department of Medicine, Brigham & Women's Hospital, Boston, Massachusetts; Patient and Family Advisory Council Members (Ms Symczak and Mr Banta), Intensive Care Unit Patient & Family Advisory Council, University of California San Francisco; and Senior Patient Advisor (Ms Carnie) and Project Manager (Ms Wong), Center for Patients and Families, Brigham & Women's Hospital, Boston, Massachusetts.

The authors declare no conflicts of interest.

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, its Board of Governors, or Methodology Committee.

This study was funded by a Patient Centered Outcomes Research Institute Eugene Washington Engagement Award (#3455, Dr Harrison).

Correspondence: Dr Harrison, Division of Hospital Medicine, University of California San Francisco, 533 Parnassus Ave, Box 0131, San Francisco, CA 94143 (

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