Active and productive patient and family advisory councils (PFACs) offer a forum for researchers to obtain ideas, input, and insights to guide research projects. PFAC members bring their experience in partnering with health care professionals and sharing their unique perspectives. A PFAC consists of patients and family members who have received care at an organization and administrators, clinicians, and staff. It provides a mechanism to:
- Seek and learn from the patient and family perspective.
- Promote a culture of patient- and family-centered care (PFCC) within an organization.
- Guide PFCC implementation through collaboration to improve programs, services, and policies.
- Enhance the delivery of high quality and safe care.
Effective PFACs have several common characteristics that include (but not limited to) the following:
- At least 50% of members are patient and family advisors (PFAs) reflecting diversity of community served
- Chair or co-chair is a PFA
- Have established guidelines (e.g., bylaws)
- Meet regularly (10-12 times per year)
- Have an agenda and maintain minutes
- Provide orientation and ongoing training to members
- Establish annual goals
- Seek a balance of PFAC-initiated and staff-initiated projects
- Evaluate effectiveness of PFAC
- Document impact of PFAC on safety and quality
A self-assessment is available to you for determining if your PFAC is ready to partner in research in the Preparing for Partnerships section of the Toolbox.
Highlight from the Field: El Consejo de Familias Latinas
Because of its growing immigrant population, increasing diversity, and the health system’s commitment to inclusion, Johns Hopkins Bayview Medical Center, in Baltimore, MD, created a Latino Family Advisory Board (LFAB), El Consejo de Familias Latinas, in 2011, with support from two pediatricians and other staff and a grant from the Thomas Wilson Foundation. The LFAB is involved in clinical care improvement, medical student education, patient engagement, and research.
The LFAB partners with researchers in the pilot study, “Salud al Día: Engaging Latino Parents in Pediatric Primary Care,” which is a randomized controlled trial comparing a parent support intervention providing periodic text messages and educational support to usual care on the engagement of limited English proficient Latino parents during their child's first year. The LFAB participated in the development of the funding application, the design of culturally appropriate videos and edited text message transcripts to make them easy to use and understandable for Spanish-speaking families.
The LFAB has also participated in studies to improve genetic counseling support, mental health screening, maternal health and increasing access to long-acting reversible contraception among Latina immigrants and Latina youth in immigrant families.
Read about a qualitative study of the LFAB in DeCamp, Gregory, Chrismer, Giusti, Thompson, & Sibinga. (2015). A voice and a vote: The advisory board experiences of Spanish-speaking Latina mothers. Hispanic Health Care International, 13(4), 217-226.