Women in the United States die before, during, and after childbirth at a higher rate than any other developed nation in the world—a sobering fact highlighted by Vice President Kamala Harris on December 7, 2021 for the first-ever Maternal Health Call to Action Summit. In her opening remarks, Harris stated we know Black and Native American women in rural areas are more likely to die of pregnancy-related complications due to systematic disparities. Systematic healthcare inequalities are a matter of life or death. Harris recognized that these efforts to improve maternal health are long overdue as the U.S. has failed to meet national targets. Harris celebrated private and public partnerships and declared that, in the United States of America, in the 21st century, being pregnant and giving birth should not carry great risk. Lantana is supporting a federal partnership to enhance the empirical base required to drive change.

To kick-off this initiative, the Department of Health and Human Services (HHS) and the Centers for Medicare and Medicaid Services (CMS) launched a new program to identify birthing-friendly hospitals based on the quality of their maternal health care. More than 20 companies and non-profits pledged to invest over $170 million in maternal health efforts domestically and globally. Since 2014, severe maternal morbidity (SMM)—defined by the Centers for Disease Control and Prevention (CDC) as “unexpected outcomes of labor and delivery that result in significant short- or long-term consequences to a woman’s health”—affects over 60,000 pregnant patients in the U.S. and has been increasing, but it is unclear as to why (1). Research into this area itself presents challenges—the list of conditions associated with maternal morbidity is long, and there has been no comprehensive research into the prevalence of maternal morbidity or the conditions associated with it. Added to that, social determinants of health (SDoH) clearly affect maternal outcomes with Black women dying in childbirth at three times the rate of white women and native women dying at twice the rate. Yet “not all states gather information on race, ethnicity, income, and health insurance status because there are no national standards for data collection and reporting.” (2)

Standards development is where Lantana comes in. The U.S. lacks consistent ways to collect and share data needed to analyze how a pregnant patient’s longitudinal medical history and socioeconomic and demographic characteristics affect outcomes for both the mother and infant. Implementation guides are used by electronic health record (EHR) vendors and other implementers to comply with reporting requirements and data exchange requests. An implementation guide is a set of rules that define terms and the data model. These rules allow different systems to connect and exchange information which helps researchers to access the data they want to study.

Funded by the Assistant Secretary for Planning and Evaluation (ASPE) Patient-Centered Outcomes Research Trust Fund (PCOR-TF) and under the guidance of the National Institutes of Health (NIH), CDC, and Office of the National Coordinator for Health Information Technology (ONC) leadership, Lantana is developing the Longitudinal Maternal & Infant Health Information for Research IG for researchers. This IG will develop a standardized approach to link electronic data on maternal and infant health for use in studying the effect of medical conditions and/or interventions on pregnant, postpartum, or lactating women and their infants.

Developing this standard involves engaging stakeholders from all aspects of the healthcare industry. We lead bi-weekly requirements gathering and stakeholder engagement calls with NIH, ONC, and the CDC. We facilitate the monthly Maternal Health Consortium meetings which includes participation from three PCOR-TF projects with a shared common goal of improving and expanding the use of EHR data for maternal health. Additionally, we facilitate Technical Expert Panel meetings to provide guidance for terminology concepts and vocabulary codes and to ensure the standard is implementable.

Studying pregnancy and post-partum health may appear to be straight forward. These seem like terms with clear definitions. But different EHRs track pregnancy differently with different triggers. And patients often see a variety of providers and their health record may not follow them from emergency room to primary care provider to Obstetrics and Gynecology offices. Additionally, patients may skip or lack access to follow-up care resulting in incomplete electronic medical information.

An important milestone of this project will be the January 2022 Health Level Seven International (HL7®) FHIR Connectathon which is a live testing event. At the Connectathon, we will test to make sure the IG functions as expected—that vendors and stakeholders will be able to pull data using FHIR and generate a measure report or transform C-CDA to FHIR and generate a measure report. Based on the results of the Connectathon, we will submit the IG for balloting in May 2022, test the IG again in at least two more Connectathons and publish the standard in early 2023. Our work is a small part of a larger effort to improve maternal health in the United States. In collaboration with our partners at NIH, ONC, and CMS, our role in this initiative will lay the foundation for implementers to provide longitudinal maternal health data that is desperately needed by researchers to better understand severe maternal health morbidity and make recommendations for preventative measures. We are proud to be part of the first steps of this marathon to solve a complex problem and support such an historic event – a federal Maternal Health Day of Action.

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(1) CDC, Severe Maternal Morbidity in the United States, https://www.cdc.gov/reproductivehealth/maternalinfanthealth/severematernalmorbidity.html

(2) Maternal Health Task Force, Maternal Health in the United States, https://www.mhtf.org/topics/maternal-health-in-the-united-states/