Amplifying community perspectives in Medicaid policymaking: findings from North Carolina

Introduction: In the midst of sweeping federal and state policy changes that will significantly impact Medicaid, effectively integrating community feedback into Medicaid policymaking will require identifying what Medicaid beneficiaries want and need to be healthy. We aimed to identify North Carolina community leaders' and community members' wants, needs, and experiences with Medicaid. Methods: This qualitative study collected data using semi-structured interviews with 4 leaders of community-based organizations (CBOs), and 6 focus groups with 37 community members held across North Carolina between April and August 2024. Results: A rapid qualitative analysis yielded 6 themes related to barriers and facilitators to overall health and well-being: (1) Challenges Applying for and Accessing Medicaid Services, (2) Addressing Health-Related Social Needs, (3) Accessing High-Quality Providers & Services, (4) Experiencing Stigma, Bias and Discrimination in Clinical Settings, (5) Promoting Coordination, Co-Location to Help with System Navigation, and (6) Enhancing Medicaid Engagement with Communities. Conclusion: CBO leaders and community members communicated actionable insights that amplify important perspectives often not incorporated in Medicaid policymaking. As Medicaid agencies contend with implementing broad structural changes to their benefits and programs, it will be critical to tailor future reforms to address community feedback and maintain the health and well-being of beneficiaries.