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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
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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 (james.harrison@ucsf.edu).

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.jonajournal.com).

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