What's Next for Modernizing Gender, Sex, and Sexual Orientation Terminology in Digital Health Systems? Viewpoint on Research and Implementation Priorities.

In 2021, Canada Health Infoway and the University of Victoria's Gender, Sex, and Sexual Orientation Research Team hosted a series of discussions to successfully and safely modernize gender, sex, and sexual orientation information practices within digital health systems. Five main topic areas were covered: (1) terminology standards; (2) digital health and electronic health record functions; (3) policy and practice implications; (4) primary care settings; and (5) acute and tertiary care settings. In this viewpoint paper, we provide priorities for future research and implementation projects and recommendations that emerged from these discussions.

Toward an inclusive digital health system for sexual and gender minorities in Canada.

Most digital health systems (DHS) are unable to capture gender, sex, and sexual orientation (GSSO) data beyond a single binary attribute with female and male options. This binary system discourages access to preventative screening and gender-affirming care for sexual and gender minority (SGM) people. We conducted this 1-year multi-method project and cocreated an action plan to modernize GSSO information practices in Canadian DHS. The proposed actions are to: (1) Envisage an equity- and SGM-oriented health system; (2) Engage communities and organizations to modernize GSSO information practices in DHS; (3) Establish an inclusive GSSO terminology; (4) Enable DHS to collect, use, exchange, and reuse standardized GSSO data; (5) Integrate GSSO data collection and use within organizations; (6) Educate staff to provide culturally competent care and inform patients on the need for GSSO data; and (7) Establish a central hub to coordinate efforts.

Transgender data collection in the electronic health record: Current concepts and issues.

There are over 1 million transgender people living in the United States, and 33% report negative experiences with a healthcare provider, many of which are connected to data representation in electronic health records (EHRs). We present recommendations and common pitfalls involving sex- and gender-related data collection in EHRs. Our recommendations leverage the needs of patients, medical providers, and researchers to optimize both individual patient experiences and the efficacy and reproducibility of EHR population-based studies. We also briefly discuss adequate additions to the EHR considering name and pronoun usage. We add the disclaimer that these questions are more complex than commonly assumed. We conclude that collaborations between local transgender and gender-diverse persons and medical providers as well as open inclusion of transgender and gender-diverse individuals on terminology and standards boards is crucial to shifting the paradigm in transgender and gender-diverse health.

Gender harmony: improved standards to support affirmative care of gender-marginalized people through inclusive gender and sex representation.

OBJECTIVE: Accurate representation of clinical sex and gender identity in interoperable clinical systems is a major challenge for organizations intent on improving outcomes for sex- and gender-marginalized people. Improved data collection has been hindered by the historical approach that presumed a single, often binary, datum was sufficient. We describe the Health Level Seven International (HL7) Gender Harmony logical model that proposes an improved approach. MATERIALS AND METHODS: The proposed solution was developed via an American National Standards Institute (ANSI)-certified collaborative balloted process. As an HL7 Informative Document, it is an HL7 International-balloted consensus on the subject of representing sex and representing gender in clinical systems based on work of the gender harmony project led by the HL7 Vocabulary Work Group. RESULTS: The Gender Harmony Model is a logical model that provides a standardized approach that is both backwards-compatible and an improvement to the meaningful capture of gender identity, recorded sex or recorded gender, a sex for clinical use, the name to use, and pronouns that are affirmative and inclusive of gender-marginalized people. CONCLUSION: Most clinical systems and current standards in health care do not meaningfully address, nor do they consistently represent, sex and gender diversity, which has impeded interoperability and led to suboptimal health care. The Gender Harmony Project was formed to create more inclusive health information exchange standards to enable a safer, higher-quality, and embracing healthcare experience. The Gender Harmony Model provides the informative guidance for standards developers to implement a more thorough technical design that improves the narrow binary design used in many legacy clinical systems.

Correction: An Environmental Scan of Sex and Gender in Electronic Health Records: Analysis of Public Information Sources.

[This corrects the article DOI: 10.2196/20050.].

Culturally Competent Gender, Sex, and Sexual Orientation Information Practices and Electronic Health Records: Rapid Review.

BACKGROUND: Outdated gender, sex, and sexual orientation (GSSO) information practices in health care contribute to health inequities for sexual and gender minorities (SGMs). Governments, statistics agencies, and health care organizations are developing and implementing modernized practices that support health equity for SGMs. Extending our work, we conducted a rapid review of grey literature to explore information practices that support quality health care for SGMs. OBJECTIVE: The aim of this rapid review of grey literature was to elucidate modern GSSO information practices from leading agencies for adaptation, adoption, and application by health care providers and organizations seeking to modernize outdated GSSO information practices that contribute to health inequities among SGMs. METHODS: We searched MEDLINE and Google from 2015 to 2020 with terms related to gender, sex, sexual orientation, and electronic health/medical records for English-language grey literature resources including government and nongovernment organization publications, whitepapers, data standards, toolkits, health care organization and health quality practice and policy guides, conference proceedings, unpublished academic work, and statistical papers. Peer-reviewed journal articles were excluded, as were resources irrelevant to information practices. We also screened the reference sections of included articles for additional resources, and canvassed a working group of international topic experts for additional relevant resources. Duplicates were eliminated. ATLAS.ti was used to support analysis. Themes and codes were developed through an iterative process of writing and discussion with the research team. RESULTS: Twenty-six grey literature resources met the inclusion criteria. The overarching themes that emerged from the literature were the interrelated behaviors, attitudes, and policies that constitute SGM cultural competence as follows: shared language with unambiguous definitions of GSSO concepts; welcoming and inclusive care environments and affirming practices to reduce barriers to access; health care policy that supports competent health care; and adoption of modernized GSSO information practices and electronic health record design requirements that address invisibility in health data. CONCLUSIONS: Health equity for SGMs requires systemic change. Binary representation of sex and gender in electronic health records (EHRs) obfuscates natural and cultural diversity and, in the context of health care, places SGM patients at risk of clinical harm because it leads to clinical assumptions. Agencies and agents in health care need to be equipped with the knowledge and tools needed to cultivate modern attitudes, policies, and practices that enable health equity for SGMs. Adopting small but important changes in the language and terminology used in technical and social health care systems is essential for institutionalizing SGM competency. Modern GSSO information practices depend on and reinforce SGM competency in health care.

An Environmental Scan of Sex and Gender in Electronic Health Records: Analysis of Public Information Sources.

BACKGROUND: Historically, the terms sex and gender have been used interchangeably as a binary attribute to describe a person as male or female, even though there is growing recognition that sex and gender are distinct concepts. The lack of sex and gender delineation in electronic health records (EHRs) may be perpetuating the inequities experienced by the transgender and gender nonbinary (TGNB) populations. OBJECTIVE: This study aims to conduct an environmental scan to understand how sex and gender are defined and implemented in existing Canadian EHRs and current international health information standards. METHODS: We examined public information sources on sex and gender definitions in existing Canadian EHRs and international standards communities. Definitions refer to data element names, code systems, and value sets in the descriptions of EHRs and standards. The study was built on an earlier environment scan by Canada Health Infoway, supplemented with sex and gender definitions from international standards communities. For the analysis, we examined the definitions for clarity, consistency, and accuracy. We also received feedback from a virtual community interested in sex-gender EHR issues. RESULTS: The information sources consisted of public website descriptions of 52 databases and 55 data standards from 12 Canadian entities and 10 standards communities. There are variations in the definition and implementation of sex and gender in Canadian EHRs and international health information standards. There is a lack of clarity in some sex and gender concepts. There is inconsistency in the data element names, code systems, and value sets used to represent sex and gender concepts across EHRs. The appropriateness and adequacy of some value options are questioned as our societal understanding of sexual health evolves. Outdated value options raise concerns about current EHRs supporting the provision of culturally competent, safe, and affirmative health care. The limited options also perpetuate the inequities faced by the TGNB populations. The expanded sex and gender definitions from leading Canadian organizations and international standards communities have brought challenges in how to migrate these definitions into existing EHRs. We proposed 6 high-level actions, which are to articulate the need for this work, reach consensus on sex and gender concepts, reach consensus on expanded sex and gender definitions in EHRs, develop a coordinated action plan, embrace EHR change from socio-organizational and technical aspects to ensure success, and demonstrate the benefits in tangible terms. CONCLUSIONS: There are variations in sex and gender concepts across Canadian EHRs and the health information standards that support them. Although there are efforts to modernize sex and gender concept definitions, we need decisive and coordinated actions to ensure clarity, consistency, and competency in the definition and implementation of sex and gender concepts in EHRs. This work has implications for addressing the inequities of TGNB populations in Canada.

A rapid review of gender, sex, and sexual orientation documentation in electronic health records.

OBJECTIVE: The lack of precise and inclusive gender, sex, and sexual orientation (GSSO) data in electronic health records (EHRs) is perpetuating inequities of sexual and gender minorities (SGM). We conducted a rapid review on how GSSO documentation in EHRs should be modernized to improve the health of SGM. MATERIALS AND METHODS: We searched MEDLINE from 2015 to 2020 with terms for gender, sex, sexual orientation, and electronic health/medical records. Only literature reviews, primary studies, and commentaries from peer-reviewed journals in English were included. Two researchers screened citations and reviewed articles with help from a third to reach consensus. Covidence, Excel, and Atlas-TI were used to track articles, extract data, and synthesize findings, respectively. RESULTS: Thirty-five articles were included. The 5 themes to modernize GSSO documentation in EHRs were (1) creating an inclusive, culturally competent environment with precise terminology and standardized data collection; (2) refining guidelines for identifying and matching SGM patients with their care needs; (3) improving patient-provider relationships by addressing patient rights and provider competencies; (4) recognizing techno-socio-organizational aspects when implementing GSSO in EHRs; and (5) addressing invisibility of SGM by expanding GSSO research. CONCLUSIONS: The literature on GSSO documentation in EHRs is expanding. While this trend is encouraging, there are still knowledge gaps and practical challenges to enabling meaningful changes, such as organizational commitments to ensure affirming environments, and coordinated efforts to address technical, organizational, and social aspects of modernizing GSSO documentation. The adoption of an inclusive EHR to meet SGM needs is a journey that will evolve over time.