Linking State Medicaid and Congenital Heart Surgical Registry Data: Building Capacity to Assess Disparities in Longitudinal Outcomes and Value for Children with Congenital Heart Disease

Project Narrative Congenital heart defects are the most common and resource intensive birth defects managed in the United States, estimated to effect over 1 million US children and 1.4 million US adults and to result in ~200,000 life- years lost and >$6 billion in inpatient acute care costs per year, with significantly worse outcomes for children from lower income neighborhoods and minorities. Despite the high prevalence, research on long-term outcomes and health expenditures is limited and etiologies of health inequities remain unknown. Linking clinical registries with longitudinal state-wide Medicaid data will 1) build a scalable resource that will allow us to assess longitudinal outcomes and resource requirements at a population level 2) generate a methodology for investigations on long-term outcomes and value, 3) assess constructs of access as modifiable mediators of social determinants of health, and 4) immediately inform policy and care.