Editor’s Note: Dr. Elif Ozdogan (she/her) is a resident physician in Pediatrics at The Boston Combined Residency Program at Boston Children's Hospital and Boston Medical Center. She is interested in quality improvement and computational research and hopes to pursue further training in Transplant Medicine. -Rachel Y. Moon, MD, Associate Editor, Digital Media, Pediatrics
What are Patient and Family Advisory Councils (PFACs)?
PFACs are volunteer groups composed of patients and their families that are established in approximately 90% of US children's hospitals. These councils provide a platform for sharing experiences and insights that drive patient-centered improvements. There are many impressive examples of PFACs directly impacting patient care, such as by creating patient-centered guidelines.
Lack of Diversity in PFACs Looms as a Significant Issue
Despite their benefits, many PFACs lack diversity. A 2022 survey of 166 PFACs found only 20% reflected the patient population they serve, with the majority of advisors identifying as White and English-speaking.
In the article and accompanying video abstract entitled “Hospital Diversity, Equity, and Inclusion Efforts: Perspectives of Patient and Family Advisors” being early released this week in Pediatrics, Carlos A. Casillas, MD, MPH, from Cincinnati Children’s Hospital and colleagues conducted focus groups with 17 PFAC members to explore barriers and solutions for the pervasive lack of diversity (10.1542/peds.2024-065789).
The authors used qualitative methods to identify key themes from the focus group discussions.
Defining and Broadening the Scope of Diversity
The first two themes work to clarify the true meaning of diversity in this setting:
- Lived experiences are paramount to driving authentic change: It is only by incorporating diverse voices that lived experiences can be shared.
- Diverse voices encompass race and ethnicity, but also experiences from all walks of life: These include individuals with disabilities and caregivers of patients with medical complexity or psychiatric conditions.
Overcoming the Structural Barriers in Recruitment
Themes 3 and 4 delve into the explicit barriers to expanding the scope of PFACs and propose organic solutions:
- Awareness: Patients and families may not be aware of the existence of PFACs. Participants suggested using community events and local partnerships to naturally engage volunteers.
- Structural barriers: Barriers such as disabilities, language differences, varying work hours, and transportation issues require active institutional efforts to create an inclusive environment. For example, Spanish-speaking PFACs were established to enable uninterrupted sharing within a shared cultural context.
Overcoming Bias
Theme 5 tackles a critical issue: PFAC members from underrepresented communities are in a vulnerable position and often feel unwelcome or tokenized. The authors emphasize this persistent problem and suggest that by genuinely including and listening to diverse voices, the narrative can shift. They also advocate for consistent bias training in the recruitment process to address these concerns effectively.
Importance of This Study
There is so much more in this article, and I highly recommend that you delve into the Results section, which provides a rich description of participant perspectives and the resulting themes.
Dr. Casillas and colleagues outline the importance of and barriers to diversifying and strengthening the role of PFACs. They remind us of pervasive implicit biases that impact care in innumerable ways. As is the case with most initiatives, the success of diverse PFACs hinges on the genuine commitment of the hospital's leadership to diversity and equity.
