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. 2025 Mar 1;32(3):417-425.
doi: 10.1093/jamia/ocae315.

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

Fabienne C Bourgeois  1   2 , Amrita Sinha  1   2 , Gaurav Tuli  3 , Marvin B Harper  1   2 , Virginia K Robbins  4   5 , Sydney Jeffrey  3 , John S Brownstein  2   3 , Shahla M Jilani  4
Affiliations

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

Fabienne C Bourgeois et al. J Am Med Inform Assoc. .

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.

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Conflict of interest statement

The authors have no competing interests to declare.

Figures

Figure 1.
Figure 1.
Birthing person data element cross-mapping to United States core data for interoperability (USCDI) version 4. (A) Sankey Plot depicting cross-mapping of birthing person clinical data elements to USCDI: 37 of 37 (100%) cross-mapped to at least 1 USCDI data element, 37 of 37 (100%) supported within structured data fields. (B) Sankey plot depicting cross-mapping of supportive care data elements to USCDI: 29 of 33 (87.88%) cross-mapped to at least 1 USCDI data element, 26 of 29 (89.66%) supported within structured data fields. * Denotes plot flow continuity.
Figure 1.
Figure 1.
Birthing person data element cross-mapping to United States core data for interoperability (USCDI) version 4. (A) Sankey Plot depicting cross-mapping of birthing person clinical data elements to USCDI: 37 of 37 (100%) cross-mapped to at least 1 USCDI data element, 37 of 37 (100%) supported within structured data fields. (B) Sankey plot depicting cross-mapping of supportive care data elements to USCDI: 29 of 33 (87.88%) cross-mapped to at least 1 USCDI data element, 26 of 29 (89.66%) supported within structured data fields. * Denotes plot flow continuity.
Figure 2.
Figure 2.
Infant/child clinical data element mapping to United States core data for interoperability (USCDI) version 4. (A) Sankey plot depicting cross-mapping of infant/child clinical data elements to USCDI: 63 of 65 (96.92%) cross-mapped to at least 1 USCDI data element, 58 of 63 (92.06%) supported within structured data fields. (B) Sankey plot depicting cross-mapping of infant/child supportive care data elements to USCDI: 35 of 45 (77.78%) cross-mapped to at least 1 USCDI data element, 23 of 35 (65.71%) supported within structured data fields.
Figure 2.
Figure 2.
Infant/child clinical data element mapping to United States core data for interoperability (USCDI) version 4. (A) Sankey plot depicting cross-mapping of infant/child clinical data elements to USCDI: 63 of 65 (96.92%) cross-mapped to at least 1 USCDI data element, 58 of 63 (92.06%) supported within structured data fields. (B) Sankey plot depicting cross-mapping of infant/child supportive care data elements to USCDI: 35 of 45 (77.78%) cross-mapped to at least 1 USCDI data element, 23 of 35 (65.71%) supported within structured data fields.
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