Transformative Use of an Improved All-Payer Hospital Discharge Data Infrastructure for Community-Based Participatory Research: A Sustainability Pathway

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Record linkage, hospital discharge data, comparative effectiveness research, community-based participatory research, disparities

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Objective: To describe the use of a clinically enhanced maternal and child health (MCH) database to strengthen community-engaged research activities, and to support the sustainability of data infrastructure initiatives.

Data Sources/Study Setting

Data Sources/Study Setting: Population-based, longitudinal database covering over 2.3 million mother–infant dyads during a 12-year period (1998–2009) in Florida. Setting: A community-based participatory research (CBPR) project in a socioeconomically disadvantaged community in central Tampa, Florida.

Study Design: Case study of the use of an enhanced state database for supporting CBPR activities.

Principal Findings: A federal data infrastructure award resulted in the creation of an MCH database in which over 92 percent of all birth certificate records for infants born between 1998 and 2009 were linked to maternal and infant hospital encounter-level data. The population-based, longitudinal database was used to supplement data collected from focus groups and community surveys with epidemiological and health care cost data on important MCH disparity issues in the target community. Data were used to facilitate a community-driven, decision-making process in which the most important priorities for intervention were identified.

Conclusions: Integrating statewide all-payer, hospital-based databases into CBPR can empower underserved communities with a reliable source of health data, and it can promote the sustainability of newly developed data systems.

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Citation / Publisher Attribution

Health Services Research, v. 50, p. 1322-1338