Five Strategies for Building Diversity in a Patient Family Advisory Council
Improving health care systems to address persistent health disparities requires partnering with the people those disparities most affect. Only they can accurately describe their experiences and share what barriers they’ve encountered.
This is where a patient and family advisory council (PFAC) comes into play. A PFAC brings together patients and their families, health care providers, and health care staff as equal partners in health care improvement. The PFAC platform enables patients and providers to partner to discuss and test ways to enhance service delivery, ensuring that patient experiences inform improvements.
“Having the people most vulnerable to morbidity and mortality in the room helps you understand how they move through health systems,” says Family Engagement Specialist Latoshia Rouse. “Their diverse range of lived experiences can help you make adjustments and figure out areas for improvement. Because there’s no one size fits all solution.”
Building diversity in a PFAC can be difficult though, Rouse continues. Non-majority and underserved populations’ relationships with health care institutions are often fraught with underlying tension and mistrust stemming from historic trauma, structural racism, and implicit bias. Yet, the voices of these populations are most needed to close the disparity gap in maternal and child health.
Rouse recently shared strategies for engaging diverse partners with the National Network of Perinatal Quality Collaboratives (NNPQC), funded by the Centers for Disease Control and Prevention (CDC). NICHQ serves as the Coordinating Center for the initiative, which seeks to deepen and accelerate improvement efforts for maternal and infant health outcomes. Here, we’ve summarized her advice into five core strategies centered on building trust and promoting inclusivity.
Develop a comprehensive recruitment strategy
Having the right people at the table begins with recruiting in the right places. Rouse recommends establishing relationships with community-based organizations, local non-profits, and advocacy organizations that represent families from diverse backgrounds—such as groups that support breastfeeding for black women. These organizations already have trusting relationships with families, so they can help health care professionals connect with them. Doulas and midwives are also invaluable partners; they not only have strong relationships with families but are also active participants in the health care system.
Public outreach in communities experiencing poor birth outcomes is also effective. For example, Rouse suggests having an outreach table at community events, or posting flyers in public restrooms and grocery stores. And don’t forget about the digital space: Facebook groups, your organization’s website, and partner organization newsletters are all opportunities to connect with new family partners.
Prioritize family partner meeting attendance
Making attendance as easy as possible tells families you value their input, which is vital for establishing trust. Rouse suggests holding meetings at lunch-time or dinner-time and having an online option for each meeting, so that participants can more easily balance attendance with their jobs and family responsibilities. Providing parking reimbursement and meals is also important, so that families can attend in-person when possible.
If you are working on a quality improvement project, make sure to invite families to learning sessions so they’re educated alongside hospital staff. Inviting them reaffirms their value to the initiative; and the resources and education they’ll gain empowers them to engage as equal partners on the PFAC.
Support inclusion and belonging
“Inclusion is about making sure families have a voice—that is belonging” says Rouse. “So, we can make sure we have diversity, but then we need to also have inclusion and belonging. When you’re able to communicate with physicians as peers, that means they are giving up some of their power and you can freely express your experiences. That is a magical place to be.”
To better promote inclusivity, Rouse suggests the following tactics:
- Onboarding: Have a clear onboarding process, so family partners understand the rules of engagement and are comfortable participating in conversations about health care improvement
- Meeting preparation:
- Engage families in creating meeting agendas, so their priorities and goals inform the meeting’s structure
- Send upcoming meeting documents to families in advance of meetings, so they can prepare and fully participate in the meeting
- Elevate expertise: Ask family partners about their specific interests and expertise, and then match their role on the project with their interest. For example, if a partner on a breastfeeding initiative is interested in education, engage them as experts on supporting breastfeeding outreach and education.
- Ask for feedback: Ask families for their feedback on how to improve meetings to better respect and incorporate their ideas and insights
- Appreciate: Regularly tell families that they are valued, respected and heard; and provide a payment or a token of appreciation that recognizes participants’ time.
Having a voice in health care improvement shouldn’t require speaking English. Interpreters are essential for building a diverse, equity-focused PFAC.
Share an impact report
If families feel like their participation won’t result in real improvement, they won’t feel valued and are less likely to participate, says Rouse. That’s why it’s important to go beyond telling families their partnership matters, and actually show them the results.
“Make sure there is always an impact report,” says Rouse. “Feeling like the work you are doing matters is why you do it. You don’t want to go and spend a year on something and find out it never impacted the organizations.”
Interested in learning more from Rouse? Here, she shares her personal story, which illustrates the pressing need to incorporate family partners in all aspects of health care improvement.
Exploring a Nonbinary Approach to Health
NICHQ is not abandoning the traditional use of the terms “mother” and “maternal.” We are embracing the inclusive language of “birthing person/people” across our work. A move toward inclusive language does not force us to stop using language that so many people identify with; at its core, inclusion is about creating more space for one another. We are taking care to expand the use of these terms in our communications, on our website, in our resources, and eventually, in all our projects.
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