The substance-exposed birthing person-infant/child dyad and health information exchange in the United States

Fabienne C Bourgeois; Amrita Sinha; Gaurav Tuli; Marvin B Harper; Virginia K Robbins; Sydney Jeffrey; John S Brownstein; Shahla M Jilani

doi:10.1093/jamia/ocae315

The substance-exposed birthing person-infant/child dyad and health information exchange in the United States

J Am Med Inform Assoc. 2025 Jan 2:ocae315. doi: 10.1093/jamia/ocae315. Online ahead of print.

Authors

Fabienne C Bourgeois^{1

2}, Amrita Sinha^{1

2}, Gaurav Tuli³, Marvin B Harper^{1

2}, Virginia K Robbins^{4

5}, Sydney Jeffrey³, John S Brownstein^{2

3}, Shahla M Jilani⁴

Affiliations

¹ Department of Pediatrics, Boston Children's Hospital, Boston, MA 02115, United States.
² Harvard Medical School, Boston, MA 02115, United States.
³ Innovation and Digital Health Accelerator, Boston Children's Hospital, Boston, MA 02115, United States.
⁴ Office of the Assistant Secretary for Health, United States Department of Health and Human Services, Washington, DC 20201, United States.
⁵ Center for Consumer Information and Insurance Oversight, Centers for Medicare and Medicaid Services, Bethesda, MD 20814, United States.

PMID: 39749875
DOI: 10.1093/jamia/ocae315

Abstract

Objective: Timely access to data is needed to improve care for substance-exposed birthing persons and their infants, a significant public health problem in the United States. We examined the current state of birthing person and infant/child (dyad) data-sharing capabilities supported by health information exchange (HIE) standards and HIE network capabilities for data exchange to inform point-of-care needs assessment for the substance-exposed dyad.

Material and methods: A cross-map analysis was performed using a set of dyadic data elements focused on pediatric development and longitudinal supportive care for substance-exposed dyads (70 birthing person and 110 infant/child elements). Cross-mapping was conducted to identify definitional alignment to standardized data fields within national healthcare data exchange standards, the United States Core Data for Interoperability (USCDI) version 4 (v4) and Fast Healthcare Interoperability Resources (FHIR) release 4 (R4), and applicable structured vocabulary standards or terminology associated with USCDI. Subsequent survey analysis examined representative HIE network sharing capabilities, focusing on USCDI and FHIR usage.

Results: 91.11% of dyadic data elements cross-mapped to at least 1 USCDI v4 standardized data field (87.80% of those structured) and 88.89% to FHIR R4. 75% of the surveyed HIE networks reported supporting USCDI versions 1 or 2 and the capability to use FHIR, though demand is limited.

Discussion: HIE of clinical and supportive care data for substance-exposed dyads is supported by current national standards, though limitations exist.

Conclusion: These findings offer a dyadic-focused framework for electronic health record-centered data exchange to inform bedside care longitudinally across clinical touchpoints and population-level health.

Keywords: United States Core Data for Interoperability (USCDI); birthing person-infant dyad; electronic health record (EHR); fast healthcare interoperability resources (FHIR); health information exchange (HIE); substance exposure.

Published by Oxford University Press on behalf of the American Medical Informatics Association 2025.

Grants and funding

75P00122P00130/U.S. Department of Health and Human Services