Centering Communities of Color in the Modernization of a Public Health Survey System: Lessons from Oregon

CONTEXT: Public health survey systems are tools for informing public health programming and policy at the national, state, and local levels. Among the challenges states face with these kinds of surveys include concerns about the representativeness of communities of color and lack of community engagement in survey design, analysis, and interpretation of results or dissemination, which raises questions about their integrity and relevance. APPROACH: Using a data equity framework (rooted in antiracism and intersectionality), the purpose of this project was to describe a formative participatory assessment approach to address challenges in Oregon Behavioral Risk Factor Surveillance System (BRFSS) and Student Health Survey (SHS) data system by centering community partnership and leadership in (1) understanding and interpreting data; (2) identifying strengths, gaps, and limitations of data and methodologies; (3) facilitating community-led data collection on community-identified gaps in the data; and (4) developing recommendations. RESULTS: Project team members' concerns, observations, and critiques are organized into six themes. Throughout this engagement process, community partners, including members of the project teams, shared a common concern: that these surveys reproduced the assumptions, norms, and methodologies of the dominant (White, individual centered) scientific approach and, in so doing, created further harm by excluding community knowledges and misrepresenting communities of color. CONCLUSIONS: Meaningful community leadership is needed for public health survey systems to provide more actionable pathways toward improving population health outcomes. A data equity approach means centering communities of color throughout survey cycles, which can strengthen the scientific integrity and relevance of these data to inform community health efforts.