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

Hale M Thompson,Clair A Kronk,Paul Pachwicewicz,Niranjan S Karnik,Ketzel Feasley

doi:10.3390/ijerph18126599

Abstract

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.

Highlights

Who Counts as Transgender? What Counts as Sexual Orientation? The Case of Patient Doe
“Doe”, indicated a possible mapping error of a gender identity noted by a provider in the social history, instead of the sexual orientation that was listed in the demographics table
Nine patients had legal sex, assigned sex at birth (ASAB), and gender identity (GI) fields misaligned in a way that suggested they might be transgender but did not make logical sense; manual validation determined that three are trans and six are cisgender

Summary

Introduction

Doe’s structured data fields for legal sex, assigned sex at birth (ASAB), and GI are aligned as male, but keywords in the social history and clinical notes of the EHR, indicate the presence of gender-confirming surgical and hormonal interventions from an outside provider, leading us to interpret patient Doe as a transgender person who has medically transitioned but has not legally or entirely socially transitioned. EHR data are the basis for a range of health research, and in the context of research and equity, perhaps we would want to count transgender patients, such as Doe, who are not “out” in clinical settings where they may not feel comfortable or safe. This case provides insight into the uses, misuses, and the importance of SO/GI EHR data collection while extending the question of who counts as transgender and, increasingly, nonbinary [1,2,3,4,5]

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Discussion

Conclusion