Advancing Surveillance of Congenital Heart Defects: Using Unparalleled Informatics and Data Science to Improve the Health of Children, Adolescents, and Adults - Through collaboration with our state public health agency, local congenital heart disease (CHD) specialists, and non-profit organizations, this project will use surveillance of congenital heart disease to improve health and continuity of care for individuals ages 0-64 in Indiana. This project will: (a) link clinical, administrative, and public health data for surveillance of CHD; and (b) refine an existent machine learning algorithm using data collected during surveillance. During the surveillance process, we will collect data related to individual characteristics, mortality, healthcare utilization, and social determinants of health of those living with CHD, with the goal of understanding better the determinants and outcomes of people of all ages with a CHD diagnosis. During the machine learning process, we will collect data related to accuracy of CHD diagnosis in the electronic health record (EHR), with the goal of understanding better how machine learning algorithms and models can be applied to public health and clinical data for more accurate surveillance. More complete and timely information will be shared with public health authorities, including the CDC and community-based organizations that work with individuals with CHD and their families. Additionally, we will work with policy partners to publish briefs and reports that will inform policymakers and the public as to how policy affects those with CHD and make policy recommendations so that individuals with CHD can experience long-term health and continuity of care. Furthermore, information about the health outcomes of those with CHD will be shared with other awardees to strengthen public health infrastructure in the United States. Similarly, results of the machine learning process will be open source-published so that all jurisdictions with an interest in CHD surveillance can use the algorithm to ensure accurate identification of CHD cases in EHR databases. Indiana University is excited to collaborate with the following public health and non-profit organizational partners to achieve the aims of the surveillance project: the Regenstrief Institute, Indiana Department of Health, Riley Children’s Health Pediatric Cardiology at Riley Hospital for Children at Indiana University Health, and Mended Little Hearts of Indiana. These partners are connected to a wider set of health systems, clinics, governmental agencies, community-based organizations, and others who share a common goal of improving the health of individuals with CHD.
