Community members bring lived experiences and expertise to research, program development, and policy implementation processes that are critical to understanding and addressing inequities. Yet federal agencies rarely pay community members for these invaluable contributions.

Over the past few years, federal agencies have been working on equity action plans and, more recently, pursuing more public engagement strategies in the public comment and regulatory (PDF) processes. The Office of Information and Regulatory Affairs recently documented strong approaches to community engagement in the federal government. However, obstacles related to time commitments, physical and language access, and regulations have prevented more federal agencies from compensating participants in community-engaged research.

Despite these challenges, three federal agencies have taken on innovative, substantive, and sustainable approaches to engaging and compensating community members in research.

The Social Security Administration set a precedent for compensating community members

In the spring of 2023, the Social Security Administration became the first federal agency (PDF) to pay people with lived experiences for participating in community-engaged research while protecting their eligibility for benefit programs.

People most in need of Social Security, including people with disabilities, people with limited English proficiency, and households needing additional income support because of disability or the death of a loved one, often face persistent administrative barriers to participating in the program. To improve services and access to programs, the Social Security Administration conducted community-based, participatory research on the obstacles to program participation faced by people living with disabilities or impairments. 

The administration formed a technical working group of people with lived experience and paid them per activity for participating in designing the study, monitoring progress, and reviewing products. Throughout this process, the administration ensured the payments did not cause participants to lose eligibility for income-based benefits programs, such as Temporary Assistance for Needy Families and Medicaid.

Paying people for their expertise allows the agency to foster meaningful, longer-term relationships with the communities it serves and led to innovative policy and programming rooted in lived experience.

The Department of Housing and Urban Development and the Department of Health and Human Services are advancing community engagement and compensation

Recent efforts documented in federal agencies’ equity plans show a continuing shift toward compensating community members and deepening public engagement efforts.

The Department of Housing and Urban Development is working with and compensating teams trying to end homelessness in continuums of care nationwide. Made up of experts in racial equity, housing justice, and coordinated entry design who have experienced homelessness, the teams worked with Black and brown community members and residents who’ve experienced homelessness to create plans for providing housing services that enhance housing stability and self-sufficiency. Across some teams, new federal funding will compensate lived experience consultants and create new staff positions.

In the Department of Health and Human Services, the Children’s Bureau has updated policies related to the use of federal funds for program self-assessment, planning, and improvement, as well as independent living services to support greater inclusion of community voices. It has also outlined clear guidelines for compensating community members for their contributions to shaping child welfare policy and practice.

The Family and Youth Service Bureau has highlighted the importance of paying adolescents and young adults with lived experience for participating in research. To mitigate barriers to accessing payment, the bureau encourages agencies to ask young people what forms of compensation best meet their needs, such as gift cards, checks, cash, or other incentives.

In addition, the Centers for Medicare & Medicaid Services has set more-meaningful standards for engaging Medicaid enrollees, their families, and caregivers to inform process and programmatic decisions. The new rule requires states to establish enrollee-only beneficiary advisory councils and provide members with financial assistance to facilitate their participation. It also specifies clear accountability requirements.

Five steps federal agencies can take to equitably compensate community members

Federal agencies aiming to build out their community engagement strategies should start with the examples above and consider the following five guiding principles of equitable compensation:

• Transparency: Clearly communicate compensation rates, expectations, processes, and timelines upfront to build trust with community members.
• Feedback: Continuously seek and incorporate input from participants to ensure compensation arrangements align with their needs and expectations.
• Respect: Offer compensation that reflects the value and importance of community members’ lived experiences and ensure they inform decisionmaking.
• Flexibility: Build flexibility into project budgets to accommodate some unexpected costs or community needs. Offer adaptable compensation options that suit diverse needs, including nonmonetary compensation such as child care or travel reimbursement.
• Advocacy: Be prepared to push for organizational changes that improve compensation and ensure long-term support.

Providing compensation for community engagement can help shift decisionmaking power to those with lived experience, and federal agencies can support this shift through authentic engagement. By valuing lived experiences, agencies can foster relationships with communities that lead to meaningful change.