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Severe Maternal Morbidity and Mortality-Electronic Health Record (EHR) Data Infrastructure

Severe Maternal Morbidity and Mortality-Electronic Health Record (EHR) Data Infrastructure
Agency
  • The National Institutes of Health
Start Date
  • 3/2021
OS-PCORTF Strategic Plan Alignment
  • Primary: 
    • Goal 1: Data Capacity for National Health Priorities
  • Secondary: 
    • Goal 2: Data Standards and Linkages for Longitudinal Research
    • Goal 3: Technology Solutions to Advance Research
    • Goal 4: Person-Centeredness

 

STATUS: Completed Project

BACKGROUND 
Understanding the causes and contributors to rising maternal mortality rates in the U.S. has been hindered by limited data infrastructure and standards for maternal and infant data. Researchers lack a consistent way to collect, share, and link maternal and infant health data to analyze how one’s medical history, as well as socioeconomic and demographic characteristics, impact pregnancy outcomes for mothers and infants. 

This project sought to strengthen the maternal and infant health data needed to examine the effects of medical conditions and/or interventions on pregnant, postpartum, or lactating women and their infants by establishing foundational electronic health record (EHR) infrastructure for patient-centered outcomes research (PCOR). This included reaching consensus on harmonized information requirements and definitions, creating a way to access health data through a Fast Healthcare Interoperability Resources (FHIR®) application programming interface (API), and developing a FHIR Implementation Guide to support use by researchers. The project outputs are meant to provide researchers with the ability to identify the full range of risk factors, pre-existing conditions, and causes of severe maternal morbidity and pregnancy-related mortality, including longitudinal medical history and basic socioeconomic and demographic characteristics that affect pregnancy outcomes for both mother and infant.

PURPOSE 
This project aimed to improve the EHR infrastructure to study maternal health outcomes by:

  • Developing Health Level Seven (HL7)/FHIR standards and guidance for pregnancy, including pregnancy outcomes, comorbid conditions, and pregnancy-related conditions and procedures, hereafter called standards. 
  • Conducting a pilot study to assess the feasibility of the standards/implementation guidance in two existing NIH data systems that contain EHR data and utilize FHIR standards for proof-of-concept. 
  • Producing a report that includes the final standards (standards, data models, vocabularies, and implementation guidance) available on the HL7 website with references on NIH, ONC, and CDC websites, and distributing it to key research and public health partners.

KEY IMPACTS 
Providing more relevant, comprehensive data: Creation of the MaternalHealthLink API 
The project developed a new analytic resource, the MaternalHealthLink API, to query EHRs for clinical data from patients in the target cohort to make these data available for analysis and visualization. The tool was piloted within a health information exchange system as part of the project’s activities.

Improving access and use of data: Linked maternal and infant health data  
The project linked clinical data and socioeconomic and demographic information on mothers and their infants with vital records, enabling researchers to identify the full range of risk factors, pre-existing conditions, and causes of severe maternal morbidity and pregnancy-related mortality, as well as their association with infant outcomes. The project made clinical maternal and infant health data available through MaternalHealthLink.

Enhancing analytic resources: Longitudinal Maternal & Infant Information for Research FHIR Implementation Guide 
The Longitudinal Maternal & Infant Information for Research FHIR Implementation Guide enables researchers to apply the requisite workflows for automating the extraction and exchange of clinical data for maternal and infant health within their own institutions’ systems.

PUBLICATIONS 
MaternalHealthLink. This is an open-source FHIR-based web application for automating the extraction and exchange of clinical data for maternal and infant health for research use.  

Longitudinal Maternal & Infant Information for Research FHIR Implementation Guide. This Implementation Guide defines a framework to enable maternal health researchers to aggregate, calculate, and analyze clinical information to explore the root causes of maternal and child morbidity and mortality.

Project Final Report. This report describes project objectives and corresponding activities and accomplishments, as well as noteworthy dissemination products produced by the project team.