The Developing a Specialty PFAC tool discusses steps and questions to consider when developing a specialty PFAC.

Specialty PFACs are councils in which membership is defined by a specific, shared characteristic. Some hospitals refer to specialty PFACs as “identity-based PFACs.” Examples of specialty PFACs include those organized around:

• language (e.g., Spanish language, multilingual PFACs);
• race or ethnicity (e.g., Hispanic/Latino/Latina/LatinX, Black and African American PFACs)
• age (e.g., Teen or Youth PFACs)
• gender identity and sexual orientation (e.g., Transgender, 2SLGBTQ+ PFACs)
• diagnosis or condition (e.g., cystic fibrosis, autism, sickle cell, deaf, mental health, rare disease PFACs)

When implemented thoughtfully, specialty PFACs can:

• help intentionally include voices and perspectives that might be underrepresented;
• help address gaps in health care by elevating issues that disproportionately affect certain populations;
• provide safe spaces for PFAs (e.g., some PFAs report feeling more comfortable discussing issues and challenges with peers who understand their experiences and backgrounds); and
• provide flexibility in structuring the PFAC in ways that work best for members of the communities involved.

It is critical to engage members of the communities you are trying to reach in developing a specialty PFAC. Work with patients, families, and community representatives (e.g., community leaders, staff from community-based groups) to ensure that specialty PFACs are developed in ways that do not unintentionally contribute to further isolation or segmentation of underrepresented groups.

It is also important to create a structure that allows for two-way communication, collaboration, and learning between specialty and other PFACs. Potential mechanisms for this include the following:

• Designate a representative from each specialty PFAC to sit on the main PFAC. Include time on the main PFAC agenda for specialty PFAC(s) to share brief updates about their work.
• Create a separate "coordinating PFAC" that includes representatives from the main PFAC, department- or unit-based PFACs, and specialty PFACs to identify and discuss emerging issues across PFACs.
• Hold quarterly meetings of PFAC leads and chairs that include hospital leadership to coordinate activities and discussions across PFACs and ensure alignment with hospital goals.
• Develop a standard template for each PFAC to use in submitting an annual report that can be shared across councils and with hospital leadership.

Example: Black/African American PFAC

The University of Rochester Medical Center (URMC) has a long history of working with specialty PFACs to learn from individuals who have experienced challenges in the healthcare system. URMC’s PFAC structure includes specialty PFACs for behavioral health, deaf, and transgender patients and families. URMC also undertook a multi-year process to develop a Black/African American PFAC. To create the group, URMC partnered with the Department of Equity and Inclusion and established a planning committee of paid consultants from the Black community, including community activists and patients and families who had reported negative experiences. URMC worked with these consultants to understand whether a specialty PFAC was the right decision and to identify what success would look like and how it should be measured. Ultimately, members helped develop a mission statement for the Black/African American PFAC that states the following: "Our mission is to hold the University of Rochester Medical Center (URMC) accountable to Black and African American patients and families to ensure that they consistently receive compassionate, person-centered care from a workforce that is culturally competent and responsive. Further, we aspire to serve and heal those who have been disproportionately affected by racism, poverty, and other forms of oppression. Building a culture of respect, safety, and advocacy for Black and African American patients and families will result in equitable patient care and positive experiences for all."

Further information:
URMC’s experiences are highlighted in a 2020 presentation titled Advisory Councils to Optimize Health for Transgender, Deaf, and Behavioral Health Patients and in an episode of the American Hospital Association’s Advancing Health Podcast titled Establishing a Patient and Family Advisory Council that Truly Reflects the Patients Served.

Example: Spanish Language PFAC

To address gaps in PFAC representativeness at a children’s hospital with a large Spanish-speaking population, the PFAC coordinator worked with Language Access Services to recruit Spanish-speaking PFAs. Initially, the PFAC coordinator added Spanish-speaking PFAs as members of the main PFAC. However, after participating in several meetings, Spanish-speaking PFAs provided feedback that the need for simultaneous interpretation during meetings created communication challenges. They also expressed a desire for dedicated time with other Spanish-speaking PFAs who understood and could speak to specific cultural issues. In response, the hospital created a separate Spanish-language PFAC. PFAs on the Spanish-language PFAC report that it is a welcoming, safe space that has enabled them to contribute to addressing gaps in family-centered, culturally congruent care. Projects have included:

• providing feedback on translation and interpretation services, including the need for more simultaneous services;
• identifying opportunities to improve communication with families that speak languages other than English, including the use of tablets or phones to translate non-medical interactions;
• informing improvements to the admissions process for Spanish-speaking families;
• identifying communication principles and specific behaviors that help build trust and connection with Spanish-speaking families;
• providing input for multilingual signage and the selection of diverse art and images that reflect the patient and family population; and
• participating in a Hispanic community resource fair, sharing information about services offered at the hospital that families and community members may not know about.

Example: LGBTQ+ PFAC

A suburban hospital learned that many local LGBTQ+ patients were traveling to get care at a hospital that patients felt provided more supportive and respectful care. Recognizing the need to address inequities in the provision of care, the hospital began identifying opportunities to improve care and services. As part of this process, staff reached out to local groups—including an LGBTQ+ elder network, teen center, and family support group—to set up meetings and ask for feedback about creating an LGBTQ+ PFAC. The hospital undertook a multi-step process to learn from LGBTQ+ patients and families how best to structure and recruit for the council. They formed an organizing committee that included community representation and worked with committee members to draft a mission statement and charter, clarify the scope and focus of the PFAC, identify potential initial projects, and set expectations for meetings. The committee developed recruitment materials with relevant messaging and highlighted the hospital's desire to learn and improve services for the LGBTQ+ community. Several years after its formation, the LGBTQ+ PFAC has contributed to multiple efforts, including participating in education and training for staff, advocating for the ability to record sexual orientation and gender identity (SOGI) in the electronic medical record, supporting community work geared toward at-risk LGBTQ+ youth, adding SOGI questions to the patient experience survey, and organizing a listening session to better understand the experiences and needs of the LGBTQ+ community.