Implementation of Gender Identity and Assigned Sex at Birth Data Collection in Electronic Health Records: Where Are We Now?

Publisher: MDPI Country of Publication: Switzerland NLM ID: 101238455 Publication Model: Electronic Cited Medium: Internet ISSN: 1660-4601 (Electronic) Linking ISSN: 16604601 NLM ISO Abbreviation: Int J Environ Res Public Health Subsets: MEDLINE

Original Publication: Basel : MDPI, c2004-

Gender Identity* ; Transgender Persons*; Data Collection ; Electronic Health Records ; Female ; Humans ; Infant, Newborn ; Male ; Sexual Behavior

In 2015, the United States Department of Health and Human Services instantiated rules mandating the inclusion of sexual orientation and gender identity (SO/GI) data fields for systems certified under Stage 3 of the Meaningful Use of Electronic Health Records (EHR) program. To date, no published assessments have benchmarked implementation penetration and data quality. To establish a benchmark for a U.S. health system collection of gender identity and sex assigned at birth, we analyzed one urban academic health center's EHR data; specifically, the records of patients with unplanned hospital admissions during 2020 (N = 49,314). Approximately one-quarter of patient records included gender identity data, and one percent of them indicated a transgender or nonbinary (TGNB) status. Data quality checks suggested limited provider literacy around gender identity as well as limited provider and patient comfort levels with gender identity disclosures. Improvements are needed in both provider and patient literacy and comfort around gender identity in clinical settings. To include TGNB populations in informatics-based research, additional novel approaches, such as natural language processing, may be needed for more comprehensive and representative TGNB cohort discovery. Community and stakeholder engagement around gender identity data collection and health research will likely improve these implementation efforts.

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K12 HS026385 United States HS AHRQ HHS; R25 DA035692 United States DA NIDA NIH HHS

Keywords: SO/GI data; clinical informatics; nonbinary; population health; transgender health disparities

Date Created: 20210702 Date Completed: 20210723 Latest Revision: 20240402

20240402

PMC8296460

10.3390/ijerph18126599

34205275