James D Harrison1, Wendy G Anderson, Maureen Fagan, Edmondo Robinson, Jeffrey Schnipper, Gina Symczak, Martha B Carnie, Catherine Hanson, Jim Banta, Sherry Chen, Jonathan Duong, Celene Wong, Andrew D Auerbach. 1. 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.
Abstract
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.
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.
Authors: Josine M Stuber; Cédric N H Middel; Joreintje D Mackenbach; Joline W J Beulens; Jeroen Lakerveld Journal: Int J Environ Res Public Health Date: 2020-04-16 Impact factor: 3.390