Dataset Information

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.

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.

SUBMITTER: Baker KE

PROVIDER: S-EPMC9748590 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature

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Publications

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.

Baker Kellan E KE Compton D'Lane D Fechter-Leggett Ethan D ED Grasso Chris C Kronk Clair A CA

Journal of the American Medical Informatics Association : JAMIA 20221201 1

<h4>Objectives</h4>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."<h4>Mat ...[more]

PMID: 36288464

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Project description:ImportanceAddressing health disparities in lesbian, gay, bisexual, transgender, and queer (LGBTQ+) communities has been a significant policy focus for more than a decade. Ensuring access to safe, respectful primary health care from knowledgeable clinicians is crucial for reducing health inequalities.ObjectiveTo assess the engagement of primary care practices in LGBTQ+ affirming care activities and identify practice characteristics associated with increased engagement.Design, setting, and participantsThis cross-sectional study used data from the National Survey of Healthcare Organizations and Systems II, which focused on primary care practices in the US and was administered between June 2022 through February 2023. Participants were primary care physicians and practice managers. Percentages were weighted for national representation. Data were analyzed from November 2023 to December 2024.ExposurePractice characteristics including practice size, ownership, federally qualified health center (FQHC) designation; percentage of patients enrolled in Medicare; percentage of patients enrolled in Medicaid; having accountable care organization (ACO) contracts for Medicare, Medicaid, or commercial insurance; rurality; census region; and LGBTQ+ Equality Score by state policy.Main outcomes and measuresSexual orientation- and gender identity- (SOGI) affirming activities, a composite variable reflecting activity specific to SOGI patients.ResultsAmong 1245 practices in the sample (38.4% response rate), 923 (77.40%) collected data on gender identity, 921 (75.62%) on sexual orientation, and 742 (65.83%) on patients' pronouns. Only 412 practices (34.42%) provided LGBTQ+ training for clinicians and 480 practices (39.20%) provided training for staff. Practices designated as FQHCs had 3.16 (95% CI, 4.60 to 19.73) percentage points higher probability of engaging in all SOGI-affirming activities) compared with non-FQHCs (P = .001). Practices with a Medicaid payer mix at least 50% had 3.28 (95% CI, 1.19 to 5.36) percentage points higher probability than practices with less than 50% Medicaid payer mix (P = .002), and participation in a Medicaid ACO was associated with 4.26 (95% CI, 0.78 to 7.73) percentage points increased probability compared with nonparticipants (P = .02). Each 1-unit increase in the state-level LGBTQ+ Equality Score was associated with 1.07 (95% CI, 0.28 to 1.85) percentage points higher probability of engaging in all SOGI-affirming activities (P = .02). High performance was negatively associated with practice rurality (average marginal effect, -16.00 [95% CI, -29.72 to -2.28]; P = .02), and rural practices were less likely to provide appropriate referrals (average marginal effect, -15.47 [95% CI, -29.22 to -1.72]; P = .03).Conclusions and relevanceThese findings suggest there is a need for federal and state mandates to require LGBTQ+ health care and competency training for health professionals and standardized data collection on SOGI, and these may be particularly important in rural regions. These measures are essential to evaluate practice performance and address health disparities effectively.

Dataset Information

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.

Objectives

Materials and methods

Results

Discussion and conclusion

Publications

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.

Similar Datasets

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