Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research
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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.
- 2.Fagan MB, Wong C, Morrison CRC, Lewis-O’Connor A, Carnie MB. Patients, persistence and partnership: creating and sustaining patient and family advisory councils in a Hospital Setting. JCOM. 2016;23:219–25.Google Scholar
- 3.Pomey M, Hihat H, Khalifa M, Lebel P, Neron A. Patient partnerships in quality improvement of healthcare services: patients’ input and challenges faced. Patient Exp J. 2015;2:29–42.Google Scholar
- 5.Wolf JA. A report of the Beryl Institute benchmarking study state of patient experience 2015. Southlake Texas: Beryl Institute; 2017.Google Scholar
- 7.Fagan MB, Wong C, Carnie MB. Brigham and Women’s Hospital Patient and Family Advisory Council report. http://www.brighamandwomens.org/Patients_Visitors/patientresources/DPH_Report_Sept_2016.pdf. Accessed 07 Nov 2017.
- 8.Warren N. Involving patient and family advisors in the patient and family centered care models. MedSurg Nurs. 2012;21:232.Google Scholar
- 9.The Change Foundation. Patient/family advisory councils in Ontario hospitals: at work, in play. Part 1: emerging themes. http://www.changefoundation.ca/patient-family-advisory-councils-report/. Accessed 07 Nov 2017.
- 11.Patient Centered Outcomes Research Institute (PCORI). What we mean by engagement. https://www.pcori.org/engagement/what-we-mean-engagement. Accessed 07 Nov 2017.
- 15.Forsythe LP, Frank LB, Workman TA, Borsky A, Hilliard T, Harwell D, Fayish L. Health researcher views on comparative effectiveness research and research engagement. J Comp Eff Res. 2017;6:246–56.Google Scholar
- 16.Perez Jolles M, Martines M, Garcia SJ, Stein GL, Mentor Parent Group Members, Thomas KC. Involving Latina/o parents in patient-centered outcomes research: contributions to research study design, implementation and outcomes. Health Expect. 2017;00:1–9. https://doi.org/10.1111/nex.12540.CrossRefGoogle Scholar
- 21.Patton MQ. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks: Sage Publications; 2002.Google Scholar
- 24.Corbin J, Strauss A. Basics of qualitative research. 3rd ed. Los Angeles: Sage Publications; 2008.Google Scholar
- 25.Schreier M. Qualitative content analysis in practice. Los Angeles: Sage Publications; 2012.Google Scholar
- 28.Cottrell EK, Whitcock EP, Kato E, Uhl S, Belinson S, Chang C, et al. Defining the benefits and challenges of stakeholder engagement in systematic reviews. Comp Eff Res. 2015;5:13–9.Google Scholar