NNIP Partners Engage Communities to Advance National Public Health Data Collection

The “Promising Actions” initiative administered by the CDC Foundation and funded by the Robert Wood Johnson Foundation, focuses on enhancing public health data collection related to social and structural determinants of health (SSDOH). The project targets improvements in three key data systems: the Behavioral Risk Factor Surveillance System (BRFSS), the Pregnancy Risk Assessment Monitoring System (PRAMS), and PLACES. Central to this initiative are the local Data Equity Coalitions (including NNIP partners from Atlanta, Detroit, Durham, Pittsburgh, and San Antonio), and the National Alliance against Disparities in Patient Health (NADPH), whose collaboration ensures that data collection is equitable and reflective of community needs.

The partners conducted interviews to validate community survey questions and focus groups and information discussions to gather insights on better capturing SSDOH data. These activities engaged over 1,250 public health professionals and community members, resulting in 311 actionable steps related to 1) building trust and strengthening partnerships with communities and survey participants and 2) embedding equity and inclusivity throughout the survey lifecycle. The active participation of these local partners and community members was crucial in ensuring that the data collected can be not only accurate but also relevant to the communities it serves.

In addition to the CDC Foundation’s collective report, individual reports and reflections were also published. Read the findings from these partner organizations (summaries are excerpts from the overall report: 

• Improving Engagement in Community Level Data Collection by Neighborhood Nexus (Atlanta) - discusses their partnership with local community-based organizations (CBOs) to conduct a series of activities around community expectations regarding public health data collection and communication. Findings focus on Latine communities and those who do not speak English as their preferred language.

• Piloting the Behavioral Risk Factors Surveillance System Survey Modules with the Neighborhood Vitality Index by Data Driven Detroit - discusses using their Neighborhood Vitality Index community-driven pilot process to administer BRFSS Social Determinants of Health and Reactions to Race modules. The group shares insights on developing locally relevant survey tools and data collection techniques.

• Health Survey Questions on Racism by DataWorks NC (Durham) - reports discuss results from a series of community conversations around the intersection of racism and health and shares community driven findings about how health surveys can better show how structural racism impacts health and wellbeing.

• Community Research Conversations by Black Equity Coalition (collaborating with the Western Pennsylvania Regional Data Center in Pittsburgh) - discusses five workshops structured to bring researchers into conversations with community leaders and members to modulate the power dynamics between these groups and start learning together to build inclusive survey practices.

• Engaging Community on National Public Health Surveillance Data by Community Information Now (San Antonio) - discusses research to assess response rates across four survey sampling strategies to understand opportunities to increase response rates from historically marginalized groups often underrepresented in survey samples.

• Improving Engagement in Community Level Data Collection by NADPH - discusses findings from 51 interviews, 15 focus groups and a community briefing with community leaders, local public health professionals and residents from the five localities about the relevancy of public health surveys to local contexts, common uses of survey data and perspectives on data democratization and equitable data systems.

Local partnerships played a critical role in driving data equity and improving public health outcomes. By incorporating community feedback and addressing local health priorities, these partners helped create more responsive and effective public health data systems. This approach not only enhances the quality of the data but also empowers communities to take an active role in their health and well-being.