Language

English

Publication Date

4-3-2024

Journal

Journal of the American Medical Informatics Association

DOI

10.1093/jamia/ocae016

PMID

38308819

PMCID

PMC10990507

PubMedCentral® Posted Date

2-2-2024

PubMedCentral® Full Text Version

Post-print

Abstract

           Objectives: Despite federally mandated collection of sex and gender demographics in the electronic health record (EHR), longitudinal assessments are lacking. We assessed sex and gender demographic field utilization using EHR metadata.

Materials and methods: Patients ≥18 years of age in the Mass General Brigham health system with a first Legal Sex entry (registration requirement) between January 8, 2018 and January 1, 2022 were included in this retrospective study. Metadata for all sex and gender fields (Legal Sex, Sex Assigned at Birth [SAAB], Gender Identity) were quantified by completion rates, user types, and longitudinal change. A nested qualitative study of providers from specialties with high and low field use identified themes related to utilization.

Results: 1 576 120 patients met inclusion criteria: 100% had a Legal Sex, 20% a Gender Identity, and 19% a SAAB; 321 185 patients had field changes other than initial Legal Sex entry. About 2% of patients had a subsequent Legal Sex change, and 25% of those had ≥2 changes; 20% of patients had ≥1 update to Gender Identity and 19% to SAAB. Excluding the first Legal Sex entry, administrators made most changes (67%) across all fields, followed by patients (25%), providers (7.2%), and automated Health Level-7 (HL7) interface messages (0.7%). Provider utilization varied by subspecialty; themes related to systems barriers and personal perceptions were identified.

Discussion: Sex and gender demographic fields are primarily used by administrators and raise concern about data accuracy; provider use is heterogenous and lacking. Provider awareness of field availability and variable workflows may impede use.

Conclusion: EHR metadata highlights areas for improvement of sex and gender field utilization.

Keywords

Female, Humans, Male, Demography, Electronic Health Records, Gender Identity, Metadata, Retrospective Studies, Transgender Persons, Adolescent, Young Adult, Adult, Middle Aged, Aged, transgender persons, gender identity, health information interoperability, metadata, medical informatics

Published Open-Access

yes

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