From clinics to discoveries: harnessing national EHR interoperability for research

Area of Science:

• Biomedical Informatics
• Health Services Research
• Data Science

Background:

• Electronic health record (EHR) data is crucial for biomedical research.
• Existing Health Information Networks (HINs) and Health Information Exchanges (HIEs) offer potential for data acquisition.
• The National Institutes of Health (NIH) All of Us Research Program requires comprehensive EHR data.

Purpose of the Study:

• To evaluate the usability of HINs and HIEs for acquiring EHR data for the NIH All of Us Research Program.
• To assess the feasibility of leveraging existing infrastructure for research data exchange.

Main Methods:

• Collaboration between the All of Us Center for Linkage and Acquisition of Data (CLAD) and eHealth Exchange.
• Transmission of participant-authorized queries to an HIE and hospital system.
• Mapping returned FHIR and C-CDA records to the OMOP Common Data Model for comparison with existing data.

Main Results:

• Newly acquired EHR records complemented existing data, improving completeness and research utility.
• Demonstrated feasibility of using HINs/HIEs for patient-authorized research data exchange.
• Identified barriers including inconsistent technical capacity for authorizations and data quality variations.

Conclusions:

• HINs and HIEs can support secure, patient-authorized EHR exchange for research purposes.
• This approach offers a viable pathway for more comprehensive, participant-driven biomedical discovery.
• Addressing technical and data quality challenges is necessary for widespread adoption.