The phrase, “nothing about us without us,” popularized by the disability rights movement, underscores how important community member engagement is to creating more equitable program design in Medicaid. Yet, historically, the communities most impacted by health inequities have not been able to help shape the public programs intended to serve them. The lack of direct, lived experience in program and policy development often results in interventions that fail to adequately support the health and well-being of community members.
In response, state Medicaid agencies, health plans, providers, and other health care organizations are increasingly seeking to integrate community member perspectives into program and policy design to improve care delivery, health care experiences, and outcomes.
Meaningful community member engagement can:
Offer Organizations Valuable Insights into Member Needs
Build Trust Between Health Care Organizations and Communities
Inform Policy and Program Improvements
Advance Health Equity
What does community engagement in Medicaid look like?
Community member engagement refers to the active involvement of individuals, families/caregivers, and community-based organizations (CBOs) in shaping the design, implementation, and evaluation of programs and policies. In Medicaid, this can take many forms with varying levels of involvement — from simply providing members with relevant information to facilitating entirely community-led policy and program decisions. Following is a continuum of Medicaid member engagement approaches, including examples of strategies:
SOURCE: Adapted from Strategies for Meaningfully Engaging MassHealth Members to Inform Program and Policy Decisions, Blue Cross Blue Shield of Massachusetts Foundation, June 2024.
Why is community engagement essential for advancing health equity?
Community engagement is critical to advance health equity. Directly engaging the lived experiences of community members can reveal health disparities and opportunities for enhancing services — spanning across race and ethnicity, sexual orientation and gender identity, age, disability status, socioeconomic position, primary language, and geography.
Many obstacles to achieving better health and well-being stem from larger structural or systemic health inequities. Community engagement can give community members a more direct say in the design and delivery of care, elevate their priorities and preferences, and uncover barriers that might otherwise not be known to health care organizations. Special attention to the strengths — and the needs — of community members with lived experience of discrimination, adversity, and inequity in health care is critical to any meaningful community engagement effort.
How can health care organization effectively engage communities?
Commit time, people, and resources. Establish a dedicated department or lead for community engagement and focus on attracting staff who reflect the populations served.
Provide equitable compensation. Develop clear, organization-wide guidelines for compensating community members for their time and expertise.
Commit to internal culture change. Foster empathy and understanding in across internal staff, including and leadership, through training and professional development.
Follow through on community feedback. Don’t just solicit input — use it to meaningfully develop or change policy. Communicate openly about what has changed due to community engagement.
What resources exist to help organizations better engage communities?
Explore the library on this resource center for an array of practical resources, lessons, and tools to help health care organizations adopt and refine meaningful community engagement strategies:
