NIH Publishes HL7 FHIR Guide for Maternal Health Data Exchange

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), part of the  National Institutes of Health (NIH), has published a Health Level Seven International (HL7) Fast Healthcare Interoperability Resource (FHIR) implementation guide for maternal and infant health data exchange.

The Maternal & Infant Health Information for Research Implementation Guide aims to allow researchers, developers, and other stakeholders to capture, aggregate, and analyze EHR data from different platforms for public health research.

Officials noted that the guide is an important step toward establishing a framework to better understand the root causes of high maternal morbidity and mortality rates, which have been increasing nationwide for two decades.

Additionally, while research increasingly has shown the links between maternal and child health, the country lacks consistent ways to analyze data to determine how maternal medical history and social determinants of health (SDOH) impact outcomes for both the mother and infant.

The HL7 FHIR guide is part of the ongoing NICHD-led Longitudinal Maternal & Child Health Information for Research Project.

"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, MD, chief of NICHD's pregnancy and perinatology branch, said in a press release.

"Outlining a standard method for accessing longitudinal clinical data from EHRs and codifying it into a guide addresses an important challenge for researchers," Chaktoura added.

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 the 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 aimed to create an infrastructure for researchers to exchange and retrieve EHR data supporting these use cases.

However, as NICHD began working with partners from the Centers for Disease Control and Prevention (CDC), ONC, the NIH National Library of Medicine, and Lantana Consulting Group, they realized they needed innovation to ease the guide's implementation.

"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. "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."

The consulting group customized an open-source FHIR application previously created for the CDC to serve as a model for a pilot application named MaternalHealthLink.

HealtheConnections, a New York-based health information exchange (HIE), provided aggregated, deidentified patient data sets that matched the research populations for the two maternal health use cases.

To test the guide and early versions of MaternalHealthLink, stakeholders gathered at two HL7 FHIR Connectathons events.

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