Reproductive and Sexual Health is Wednesday’s theme for this year’s National Public Health Week. One of the critical issues related to reproductive and sexual health is the increasing rates of maternal mortality in the United States. Maternal mortality, or the death of a woman before, during, or after childbirth, is a critical indicator of the overall health of a population. According to a new report from the Centers for Disease Control and Prevention (CDC), 1,205 women died of maternal causes in the United States in 2021; this represents a 40% increase from the previous year. The U.S. rate for 2021 was 32.9 maternal deaths per 100,000 live births, which is more than ten times the estimated rates of some other high-income countries.

Black women in the United States in particular experience significant disparities in maternal health. According to the CDC, Black women are three times more likely to die from pregnancy-related complications than White women. There are multiple factors that contribute to these disparities, including lack of access to quality healthcare, underlying chronic conditions, structural racism, implicit bias, and other social determinants of health.

In December 2021, Vice President Kamala Harris issued a nationwide Call to Action for federal agencies, businesses, and non-profits to solve the maternal health crisis collaboratively, marking the White House’s first-ever Maternal Health Day of Action. Funded by the Assistant Secretary for Planning and Evaluation (ASPE) Patient-Centered Outcomes Research Trust Fund (PCORTF), the National Institutes of Health (NIH) contracted with Lantana to develop a Longitudinal Maternal & Infant Health Information for Research (MaternalHealth) Fast Healthcare Interoperability Resources (FHIR) implementation guide (IG) for researchers. We discussed in connection with Maternal Health Day of Action; you can read about it here.  

To ease the adoption and implementation burden, Lantana piloted automation and standards tooling for research data acquisition. An open-source, measure-based application, MaternalHealthLink, can provide data access and flexibility to accommodate researchers’ needs over time. Lantana customized NHSNLink, an open-source FHIR application for public health reporting developed under contract with CDC’s National Healthcare Safety Network (NHSN), for MaternalHealthLink.

The piloting of MaternalHealthLink with a health information exchange (HIE) demonstrated the feasibility of implementing the Longitudinal Maternal & Infant Information for Research FHIR IG standard with a real-world clinical data source to make available for researchers. To further evolve this tooling and framework, it will be critical to test it at scale, with direct engagement with a researcher. Then we can begin to recognize researcher-specific needs and enhance and improve MaternalHealthLink so that researchers have access to the longitudinal health information necessary to improve maternal and infant health outcomes.

As MaternalHealthLink continues to expand, we can expect to see even more meaningful longitudinal data on maternal and infant outcomes, leading to recommendations for preventative measures and improved healthcare outcomes for mothers and children. We are proud of the work we have done and continue to do, but we know that there is a lot more work that needs to be done to improve and address the disparities in maternal and infant health in the United States.