Too often, research has exploited the communities being studied. But there are ways to ensure research genuinely reflects the expertise, experiences, and priorities of the communities who research and policy intend to serve.

The Urban Institute’s Health Equity Community Advisory Board (CAB) is one example. Since 2020, the group has proven that effective, community-informed research is possible, but it requires more than consultation. It demands deep, intentional collaboration.

Funded by the Robert Wood Johnson Foundation, the CAB brought together Medicaid participants and family members to improve Urban’s research, advance equity, and inform policy. CAB members worked directly with Urban researchers to identify, shape, and execute research focused on topics such as the implementation of postpartum coverage extensions and work requirements in Medicaid, variation in hospital safety measures, and disability and access to care.

Here we highlight six lessons from listening sessions with the CAB members and Urban researchers for other organizations seeking to partner with or strengthen a community advisory board.

1. Communicate clearly throughout the project—especially at the beginning

When the Urban team first solicited applications to the CAB, we shared details of the overarching project, its goals, the CAB’s purpose, and the roles and responsibilities of both CAB members and the Urban staff. It's essential to be transparent up-front about institutional realities and limits and opportunities for joint decisionmaking. With this clarity, the CAB members understood how they could contribute and felt that their time and perspectives would be valued.

“I knew the CAB was actually worth time and trust because they… were so clear about exact goals that I knew it would probably not be performative.” —CAB member

Researchers should also be intentional in how they communicate about the research itself. Presenting information in accessible, jargon-free language is essential for fostering respect, inclusivity, and productive dialogue with CAB members.

2. Build in adequate funding

Setting up and maintaining a CAB that successfully improves research requires dedicated time and funding that funders and researchers must anticipate and build into project budgets.

For example, projects need enough resources to train both researchers and CAB members, facilitate regular discussions between researchers and CAB members, and cover researchers’ time and appropriately compensate CAB members.

3. Recruit members with a wide range of expertise and value

CAB members brought a wide range of expertise in Medicaid and the many different communities who engage with it. Creating opportunities for the researchers and CAB members to learn about and from one another, such as through one-on-one meetings, helped them value each other’s expertise and perspectives and ultimately strengthened research studies.

Matching CAB members and researchers with similar interests can also foster mutual understanding, break down barriers to communication rooted in hierarchy and formal roles, and mitigate power imbalances.

“This is the first time that… all of my experiences—whether it's my own, my family’s, my community’s—it’s welcome here.… My lived experience and the wisdom that I gained from the community means just as much as… those people that have those alphabet letters attached to their name.” —CAB member

Fairly compensating CAB members is another essential part of valuing members’ knowledge and experiences. But it can be challenging because if a CAB member is receiving income-based public benefits, the compensation could jeopardize their benefits. To avoid this, we worked closely with individual CAB members to structure compensation. We offered members a menu of project tasks, broken down by anticipated hours, and had them choose the ones they felt matched the compensation.    

4. Build trust and address power imbalances

Power imbalances between researchers and CAB members are inherent, and it’s important to acknowledge and creatively address them. For example, we couldn’t implement some CAB suggestions into research studies because of funding, timing, or other institutional constraints. When these barriers arise, it can reinforce uneven power dynamics because the researchers are the final decisionmakers. As one of our research colleagues said, “The power problem originates with responsibility and accountability. Those of us that bring the money in, we’re ultimately the ones accountable [to the funder].” Researchers agreed that involving CAB members earlier in the research process, especially during proposal development, can allow researchers and CAB members to share accountability and establish research aims together.

Researchers can also cultivate trust by reflecting on their own experiences, knowledge gaps, and potential biases and by embodying humility. One CAB member reflected on offering researchers feedback and hearing them say, “I'm so appreciative… because I was thinking about this in a wrong, different way.” The CAB member said it was “just eye opening… [for the researchers] to be humbled enough to know that, yes, [they are] smart, yes, [they are] intelligent, but then at the same time [they] can still learn and still do it different.”

The researchers were also committed to acknowledging CAB members’ feedback, ensuring members’ contributions were appropriately credited, and providing coauthorship opportunities—all of which created a shared ownership that helped ensure the researchers’ and CAB’s collaboration was not extractive.

Lastly, having a dedicated staff member serve as a primary contact and advocate for CAB members can also foster trust and respect. The CAB advocate relayed and helped address members’ concerns, smoothed communication, and helped members trust the project and the researchers.

5. Ensure participation benefits CAB members and their communities

CAB members said it was important that CAB participation offered them pathways for learning and deeper involvement. In response to CAB feedback, Urban project staff created spaces for members to connect, learn and share with each other, and participate in skill-building trainings from Urban experts that helped members strengthen their work in their own communities.

“The greatest thing I got out of this is… I’ve learned how to be a better advocate because of here… Our research and the things that we’re doing is making an impact in government policy… It’s also made a change within each of us individually.” —CAB member

The CAB also supported members taking integral roles in the work. Some members joined studies examining disability and postpartum coverage, and some submitted comments to a federal request for information about access and coverage in Medicaid and the Children’s Health Insurance Program that drew on their expertise and experiences.

6. Create ongoing feedback loops

CAB members said when researchers asked for their input on what was and wasn’t working about the CAB, they felt that their preferences mattered.

In the CAB’s initial years, members only worked directly with researchers at full-team meetings and provided written feedback. After getting CAB members’ input, the Urban team changed the process to have members meet one-on-one with researchers before the meeting to provide feedback. CAB members said these meetings allowed them to better understand the research and provide feedback. As one researcher noted, “The benefit of just having repeated interaction on an individual level with one or two CAB members… [was that] I got to really understand their experience and their perspectives, and I thought that was just more helpful for guiding the research over time.”

It’s also important to close the feedback loop. Debriefing with CAB members about outcomes of the research can show them how their input shaped research outcomes. 

Urban’s health equity community advisory board can be a model for other researchers

Rigorous, inclusive, and equity-centered community advisory boards don’t simply add value. They meaningfully shape project design, analysis, and dissemination in ways that can’t be achieved through traditional research alone. As a member of the research team said, “There's no substitute for the insider perspective on a lot of topics.… Ultimately, we should probably never be assuming some authority on something without consulting people who are actually walking the walk.”

Together, the lessons above provide clear evidence that, by grounding our approach in authentic engagement, reciprocity, and community partnership, our CAB can be a model for integrating community voices into research and policy.