Co-establishing an infrastructure for routine data collection to address disparities in infant mortality: planning and implementation

BACKGROUND: Efforts to address infant mortality disparities in Ohio have historically been adversely affected by the lack of consistent data collection and infrastructure across the community-based organizations performing front-line work with expectant mothers, and there is no established template for implementing such systems in the context of diverse technological capacities and varying data collection magnitude among participating organizations. METHODS: Taking into account both the needs and limitations of participating community-based organizations, we created a data collection infrastructure that was refined by feedback from sponsors and the organizations to serve as both a solution to their existing needs and a template for future efforts in other settings. RESULTS: By standardizing the collected data elements across participating organizations, integration on a scale large enough to detect changes in a rare outcome such as infant mortality was made possible. Datasets generated through the use of the established infrastructure were robust enough to be matched with other records, such as Medicaid and birth records, to allow more extensive analysis. CONCLUSION: While a consistent data collection infrastructure across multiple organizations does require buy-in at the organizational level, especially among participants with little to no existing data collection experience, an approach that relies on an understanding of existing barriers, iterative development, and feedback from sponsors and participants can lead to better coordination and sharing of information when addressing health concerns that individual organizations may struggle to quantify alone. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-021-07393-1.