Will clinical standards not be part of the choir? Harmonization between the HL7 gender harmony project model and the NASEM measuring sex, gender identity, and sexual orientation report in the United States

Kellan E Baker; D'Lane Compton; Ethan D Fechter-Leggett; Chris Grasso; Clair A Kronk

doi:10.1093/jamia/ocac205

Will clinical standards not be part of the choir? Harmonization between the HL7 gender harmony project model and the NASEM measuring sex, gender identity, and sexual orientation report in the United States

J Am Med Inform Assoc. 2022 Dec 13;30(1):83-93. doi: 10.1093/jamia/ocac205.

Authors

Kellan E Baker^{1

2

3}, D'Lane Compton⁴, Ethan D Fechter-Leggett⁵, Chris Grasso⁶, Clair A Kronk^{7

8}

Affiliations

¹ Whitman-Walker Institute, Washington, District of Columbia, USA.
² Department of Health Policy and Management, George Washington Milken Institute School of Public Health, Washington, District of Columbia, USA.
³ Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
⁴ Department of Sociology, University of New Orleans, New Orleans, Louisiana, USA.
⁵ Respiratory Health Division, National Institute for Occupational Safety and Health (NIOSH), Centers for Disease Control and Prevention (CDC), Morgantown, West Virginia, USA.
⁶ Fenway Health, Boston, Massachusetts, USA.
⁷ Center for Medical Informatics, Yale University School of Medicine, New Haven, Connecticut, USA.
⁸ Center for Applied Transgender Studies (CATS), Chicago, Illinois, USA.

Abstract

Objectives: To propose an approach for semantic and functional data harmonization related to sex and gender constructs in electronic health records (EHRs) and other clinical systems for implementors, as outlined in the National Academies of Sciences, Engineering, and Medicine (NASEM) report Measuring Sex, Gender Identity, and Sexual Orientation and the Health Level 7 (HL7) Gender Harmony Project (GHP) product brief "Gender Harmony-Modeling Sex and Gender Representation, Release 1."

Materials and methods: Authors from both publications contributed to a plan for data harmonization based upon fundamental principles in informatics, including privacy, openness, access, legitimate infringement, least intrusive alternatives, and accountability.

Results: We propose construct entities and value sets that best align with both publications to allow the implementation of EHR data elements on gender identity, recorded sex or gender, and sex for clinical use in the United States. We include usability- and interoperability-focused reasoning for each of these decisions, as well as suggestions for cross-tabulation for populations.

Discussion and conclusion: Both publications agree on core approaches to conceptualization and measurement of sex- and gender-related constructs. However, some clarifications could improve our ability to assess gender modality, alignment (or lack thereof) between gender identity and assigned gender at birth, and address both individual-level and population-level health inequities. By bridging the GHP and NASEM recommendations, we provide a path forward for implementation of sex- and gender-related EHR elements. Suggestions for implementation of gender identity, recorded sex or gender, and sex for clinical use are provided, along with semantic and functional justifications.

Keywords: Engineering; Health Level Seven; National Academies of Science; and Medicine; gender identity; health information interoperability; sex.

MeSH terms

Electronic Health Records
Female
Gender Identity*
Health Level Seven*
Humans
Infant, Newborn
Male
Semantics
Sexual Behavior
United States

Grants and funding

T15 LM007056/LM/NLM NIH HHS/United States