Exploring opportunities beyond a traditional PFAC structure can help healthcare organizations build relationships with and learn from a more representative mix of people. A PFAC coordinator who has championed efforts to partner with patients and families from underrepresented communities explained the need to look beyond the PFAC as the only mechanism for partnership by offering this advice:

“Sometimes it doesn’t work to recruit people into structures that weren’t built for them. Partnership doesn’t need to look one certain way. We can look at different ways of reaching out. We can be creative. We can experiment with new opportunities and think differently.”

Creating opportunities for partnership beyond the PFAC can help:

• build trust, particularly with communities and individuals who may not have regular contact with the healthcare system (e.g., undocumented immigrants, low-income families, people experiencing homelessness);
• provide opportunities to learn from communities that are underrepresented in ways that feel welcoming and safe; and
• create pathways to PFAC membership for people who are interested.

Community organizations and groups can be helpful partners in learning about ways to engage patients, families, and community members outside of a PFAC. To identify community partners, reach out to groups within the hospital that may have existing connections, such as the Office of Health Equity, the Community Impact team, the Community Engagement Office, and Spiritual Services.

Community partners to connect with include:

• health centers
• faith-based organizations
• local businesses and nonprofit organizations
• social service organizations
• community-based programs that address social determinants of health
• homeless shelters
• tribal councils
• schools

During conversations with community partners:

• Share information about the perspectives, backgrounds, and experiences that are missing from the PFAC.
• Discuss why it is important for the hospital to address these gaps and share goals related to improving care experiences and outcomes.
• Ask about effective ways to connect with and engage patients, families, and community members from the populations you are trying to reach.
• Discuss structures for sharing community perspectives and experiences that may already exist in the community, including whether there are opportunities for the hospital to participate in existing meetings, gatherings, or forums to learn about community members’ health-related needs, experiences, and concerns.
• Ask how the hospital can make sure that outreach efforts are beneficial to and positive experiences for the community.

As a next step, work with the PFAC team to develop specific ideas and plans for engaging patients, families, and community members outside the PFAC. Review the examples below for ideas from other healthcare organizations, and be sure to engage community partners in helping to co-develop any new structures or mechanisms for partnership.

Example: Partner in Community Conversations

A healthcare organization identified “increasing access to mental health services and ensuring that patients receive timely, effective, and appropriate care” as a strategic priority. To learn more about barriers to accessing and receiving mental health services, staff held discussions with a local behavioral health provider. Through these conversations, the healthcare organization learned that a church-based ministry for Black men was holding a series of community meetings about mental health. Staff from the healthcare organization reached out to the church-based ministry and were invited to attend the meetings to hear more about community concerns and needs for support.

Example: Participate in Existing Community Structures

A healthcare organization with a large Indigenous population held conversations with tribal elders to learn about community needs and concerns. These initial conversations led to an invitation for PFAC coordinators to attend a series of Talking Circles, a traditional Indigenous practice that encourages equitable sharing, truth-telling, and deep listening. Staff from the healthcare organization had the opportunity to hear from community members through health-focused Talking Circles held with Indigenous populations in eight communities.

Example: Community Councils

To engage individuals who might not be comfortable attending PFAC meetings in a structured setting, one hospital started a community advisory council that meets outside of the hospital. The hospital began by forming a planning committee for the community council that included individuals from community-based organizations, the local health department, hospital staff who had experience working with community members (e.g., social workers and community health workers), and community members. The planning committee determined that the community advisory council would:

• include a core group of community council members to help plan monthly meetings and agendas;
• meet in locations convenient for community members (e.g., at community centers, community organizations, libraries);
• encourage but not require regular or consistent attendance at meetings;
• provide an opportunity for community members to share perspectives, experiences, needs, and concerns with the healthcare organization;
• include representatives from the hospital in a listening role and only with approval from community council members; and
• over time, transition to a council that is primarily led by community members while being supported by the hospital.

Example: E-Advisors, E-Partners, or E-Council

E-advisors are patients and families who work in a virtual environment, participating in activities such as answering surveys, responding to open-ended questions to provide insights, and reviewing and providing feedback on specific documents or materials.

One hospital with a large e-advisor program asks their e-advisors to complete a brief demographic survey, which helps them direct outreach to and get input from specific groups as needed. The hospital also has used the e-advisor program to develop relationships with PFAs from backgrounds underrepresented on the PFAC and explore their interest in serving on the PFAC. Because e-advisors go through minimal onboarding and training and have a lot of flexibility with participation (e.g., e-advisors can choose whether and when to engage and work on tasks as their schedule allows), the e-advisor program has helped improve advisor representativeness. The hospital is currently exploring ways to improve the ability to learn from patients and families who lack consistent and reliable access to digital technologies.

Example: Discussion Groups

Discussion groups are short-term opportunities typically organized around a specific topic. In a discussion group, an experienced facilitator from the hospital or community asks tailored, open-ended questions to a group of 10 to 12 participants. The goal is to gain deeper insights from community members about their experiences and perspectives along with ideas for change. Depending on participants' preferences, discussion groups may be held in person or virtually.

As one example of how hospitals have used discussion groups, a hospital wanted to obtain feedback about the development of a patient bill of rights from individuals experiencing homelessness. Staff at the hospital contacted a local homeless shelter and worked with them to organize a discussion group onsite. In addition to providing insightful input for the patient bill of rights, the discussion group initiated an ongoing touchpoint between the shelter and the healthcare system.

Example: Listening Sessions

Listening sessions tend to be conversation-based and more unstructured than a discussion group, although they may be guided by several overarching questions. They may also include more participants (20 to 25) and be slightly longer (60 to 90 minutes) due to the more free-flowing nature of the session. The goal of listening sessions is to create a safe space for community members to share honest experiences and perspectives and to ask questions to ensure the hospital fully understands their concerns and needs.

As one example, a hospital wanted to gather input from Spanish-speaking patients and families about the development of programs to address social determinants of health. The hospital worked with a Latino-led, Latino-serving community group whose mission was to strengthen the community and advocate for health equity. The community group advertised and provided space for the listening session. The hospital managed logistics, provided food, and worked with center staff to offer child care. The listening session was led by two staff members from the hospital who were native Spanish speakers and attended by several other Spanish-speaking staff members. These same staff members returned for a follow-up session at the community group to share how the hospital was working to incorporate information from the listening session into new and existing programs. Due to the success of the initial listening session, the hospital is exploring opportunities to hold regular listening sessions at the center.

Another hospital uses “Patient and Family Cafes” as a way to hold conversations with patients and families without the formal commitment of being an advisor. The cafes encourage open conversation and also provide an opportunity to obtain patient and family responses to specific questions. The cafes offer an alternative for advisors who may not be able to complete the more rigorous onboarding process required for full PFAC membership.

Example: Directed Outreach

Sometimes, the best way to learn from families is through individual, directed outreach. This outreach may occur as part of a coordinated outreach program, or it may occur in response to comments or feedback about a specific experience provided by patients and families. For example, Children's Mercy Kansas City uses "family tracers," PFAs who talk with patients and families during their healthcare experience. The program was started as part of a coordinated effort to gather feedback, gain insights to inform hospital-wide initiatives and create opportunities for the hospital to learn from populations that were underrepresented on Children's Mercy's various PFACs.

Further information: Family Experience Tracers: Patient Family Advisor led interviews generating detailed qualitative feedback to influence performance improvement