IJPDS International Journal of Population Data Science

Researchers from the Regenstrief Institute and Indiana University (IU) Fairbanks School of Public Health, Indianapolis, USA, are developing an innovative system to create a comprehensive registry of health data on pregnant people and their infants. The infrastructure will enable essential longitudinal surveillance and data linkage required for research into stillbirth, neonatal abstinence syndrome (NAS), and congenital syphilis (CS).

The U.S. State of Indiana faces significant maternal and child health (MCH) challenges. The state ranks second in the nation for stillbirths. The causes of stillbirth still elude physicians and researchers. While some fetuses die in utero from poor placental health, genetic conditions, congenital anomalies, and viruses, many questions remain as to how to prevent future stillbirths.

Addressing the root causes of stillbirth and congenital conditions such as neonatal abstinence syndrome and congenital syphilis requires a public health response that examines both mom and baby’s health. But, the U.S. lags behind other high-economic resource nations in its ability to integrate medical and public health data for surveillance research. Health records are siloed within states and rely upon state legislatures and local initiatives to enable information exchange to link records for research.

However, despite its dismal health rankings (35^th out of 50 states for overall health), Indiana has one of the most connected health information exchanges in the U.S. Through the Indiana Network for Patient Care, Regenstrief Institute scientists link moms’ and babies’ electronic health records (EHR) and public health data to conduct longitudinal surveillance of stillbirth, NAS, and CS. The ability to create such a registry is the foundation of a nationwide, U.S. Centers for Disease Control and Prevention (CDC)-funded surveillance project.

The details of this new project, A Statewide System for Maternal-Infant Linked Longitudinal Surveillance: Indiana’s Model for Improving Maternal and Child Health, are published in the International Journal of Population Data Science (IJPDS). The collaborative team from the Regenstrief Institute, IU Fairbanks School of Public Health, IU School of Medicine, Indiana Health Information Exchange, Indiana Department of Health, and Marion County Public Health Department provide a roadmap to their innovative system.  

Firstly, researchers develop data sets using EHR data and public health data such as: birth and death records, vaccine registries, and the Indiana Birth Defects and Problems Registry. They then identify babies who have died of stillbirth, or have been diagnosed with NAS or CS. Finally, they link the babies’ medical records to their mothers’ medical records and update with new cases regularly to produce a registry.

This IU/Regenstrief MCH registry provides multiple benefits to maternal and child health and public health informatics in Indiana and represents a snapshot of possible research that can be conducted with a statewide health information exchange. It allows researchers to survey mom’s health retrospectively and baby’s health longitudinally in identifying predictors of stillbirth, NAS, and CS. Knowing these influencing factors, they then work with public health partners in maternal and child health programming to tailor interventions.

According to lead author Dr. Jill Inderstrodt, “Linking moms and babies in the electronic health record is one of the most important things we can do in using surveillance to investigate the causes of deadly congenital conditions. We are so lucky to have resources such as the Indiana Network for Patient Care that allow us to work towards improved maternal and child health in Indiana.”

 

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Jill Inderstrodt, PhD, MPH, Research Scientist, Clem McDonald Center for Biomedical Informatics, Regenstrief Institute, Indianapolis, USA

Inderstrodt, J., Riggins, D., Greenwell, A., Price, J., Williams, J., Bezy, E., Forkner, A., Bowman, E., Miller, S., Schleyer, T., Grannis, S. and Dixon, B. (2024) “A statewide system for maternal-infant linked longitudinal surveillance: Indiana’s model for improving maternal and child health”, International Journal of Population Data Science, 9(2). doi: 10.23889/ijpds.v9i2.2395.