- The National Institutes of Health
- Standardized Collection of Clinical Data.
- Linking of Clinical for mothers and infants and Other Data for Research
- Use of Clinical Data for Research
STATUS: Active Project
The purpose of this project is to strengthen both maternal and infant health data needed to examine the effect of medical conditions and/or interventions on pregnant, postpartum or lactating women and their infants. The National Institutes of Health/National Institute of Child Health and Human Development in collaboration with the Office of the National Coordinator, and the Centers for Disease Control and Prevention will develop the foundational EHR infrastructure for patient-centered outcomes research on maternal morbidity and mortality.
Designed to first engage stakeholders from the research, public health and providers communities, the project is aimed at reaching a consensus on harmonized information requirements and definitions to create a means of accessing these data through a Fast Healthcare Interoperability Resource (FHIR)® application programming interface (API).
The final expected deliverable is an Health Level Seven (HL7)® FHIR® Implementation Guidance encompassing pregnancy, pregnancy outcomes, and pregnancy-related conditions, co-morbidities, and procedures. Henceforth, Pregnancy will encompass the 1-year postpartum period.
The HL7® FHIR® Implementation Guide will provide researchers 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 the mother and the infant.
PROJECT PURPOSE & GOALS
The purpose of this project is to address the following objectives:
Develop HL7/FHIR® standards and guidance for pregnancy, including pregnancy outcomes, comorbid conditions, and pregnancy-related conditions and procedures, hereafter called Standards.
Conduct 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.
Conduct a feasibility pilot study in health departments in 1-2 states and the District of Columbia using the Standards (Deliverable #1) to link EHR data with maternal mortality data in vital records.
Produce a report that includes the Final Standards (standards, data models and vocabularies, and implementation guidance) available on the HL7 website with references on NIH, ONC, and CDC websites, and distribute it to key research and public health partners.