Item of Interest: NICHD-Developed Guide Sets Framework to Link Maternal, Infant Health Data

A health care provider shows a digital tablet to a mother holding a child.
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A new guide developed by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), part of the National Institutes of Health (NIH), along with federal and private partners, promises to standardize the exchange of clinical data on maternal and infant health. The Maternal & Infant Health Information for Research Implementation Guide external link enables researchers, developers, and others to capture, aggregate, and analyze data from different electronic health records (EHR) systems in support of critical public health research.

The guide is an important step toward establishing a common framework to help clinicians and scientists better understand the root causes and high rates of maternal morbidity and mortality, which have been rising in the United States for two decades. Research increasingly shows that maternal and child health are closely linked, yet the United States lacks consistent ways to collect, share, and analyze data to determine how maternal medical history and socioeconomic and demographic characteristics affect health outcomes for both the mother and infant.

The team created this Fast Healthcare Interoperability Resource (FHIR) as part of the ongoing NICHD-led Longitudinal Maternal & Child Health Information for Research Project to strengthen the U.S. maternal and infant health data evidence base. The guide was recently approved by Health Level Seven International® (HL7). The accredited organization develops standards focused on EHR, and leverages the HL7 Release 4 standard defining how health data are exchanged between information systems regardless of specific storage features, such as platform.

The guide is one of several projects funded by the Patient-Centered Outcomes Research Trust Fund, under the HHS Office of the Assistant Secretary for Planning and Evaluation, that is designed to improve EHR data for research on maternal health. The office also established a Maternal Health Consortium for project representatives and other federal partners to share knowledge about their efforts.

Making Data Flow

Though the guide focuses on data infrastructure, it addresses a practical challenge of EHRs, now mandated across healthcare systems. “We were trying to figure out how to connect a mother to her records—whether she’s seen within one system or not—and then connect to her infant’s records,” said Nahida Chakhtoura, M.D., chief of NICHD’s Pregnancy and Perinatology Branch. “Outlining a standard method for accessing longitudinal clinical data from EHRs and codifying it into a guide addresses an important challenge for researchers.”

With input from experts across the maternal health research community, the team established two research populations to serve as “use cases” for the guide’s development: women who died within 365 days of a pregnancy regardless of cause of death or pregnancy outcome, and women diagnosed with pregnancy-induced hypertension, gestational hypertension, and/or post-partum hypertension within six weeks of delivery.

Initially, the project sought to establish an infrastructure for researchers to exchange and/or retrieve data supporting these use cases from EHRs. But as NICHD began collaborating with partners from the Centers for Disease Control and Prevention (CDC), the Office of the National Coordinator for Health Information Technology, the NIH National Library of Medicine, and Lantana Consulting Group, they realized they needed innovation to both link a mother’s records to those of her children and ease implementation of the guide.

“The question became: how do we scratch the itch of wanting to get data in the hands of researchers,” said Courtney Panaia-Rodi, project executive and chief executive officer of Lantana Consulting Group, based in Thetford, VT. “It became clear that the more impactful thing would be to build tools, compliant with the implementation guide, that could make data flow, and expedite access to clinical EHR data for researchers.”

Lantana customized an open-source FHIR application that was previously developed for the CDC to serve as a model for a pilot application named MaternalHealthLink external link . The New York-based health information exchange HealtheConnections external link provided aggregated, deidentified sets of patient data that matched each of the research populations for the two use cases. To test the guide and early versions of MaternalHealthLink, vendors and stakeholders gathered at two “HL7 FHIR Connectathons” to work through data exchange capabilities and feasibility, which further informed the application’s code.

With the successful pilot of MaternalHealthLink and the publication of the guide in March 2023, the group is recommending expanding its pilot in an implementation phase. Both the guide external link and MaternalHealthLink external link are now publicly available for researchers to use.

“This guide offers a blueprint to help researchers reap the benefits of EHR data,” added Dr. Chakhtoura. “Harmonizing and making these connections can help advance maternal and child health.”

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