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

ABSTRACT: 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.

SUBMITTER: Lau F

PROVIDER: S-EPMC7671624 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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

Lau Francis F Antonio Marcy M Davison Kelly K Queen Roz R Devor Aaron A

Journal of the American Medical Informatics Association : JAMIA 20201101 11

<h4>Objective</h4>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.<h4>Materials and methods</h4>We searched MEDLINE from 2015 to 2020 with terms for gender, sex, sexual orientation, and electronic health/medical records. Only literature reviews, primar ...[more]

PMID: 32935124

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Project description:BackgroundOutdated 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.ObjectiveThe 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.MethodsWe 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.ResultsTwenty-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.ConclusionsHealth 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.

Project description:BackgroundInternationally, patient-accessible electronic health records (PAEHRs) are increasingly being implemented. Despite reported benefits to patients, the innovation has prompted concerns among health care professionals (HCPs), including the possibility that access incurs a "dumbing down" of clinical records. Currently, no review has investigated empirical evidence of whether and how documentation changes after introducing PAEHRs.ObjectiveThis paper presents the protocol for a scoping review examining potential subjective and objective changes in HCPs documentation after using PAEHRs.MethodsThis scoping review will be carried out based on the framework of Arksey and O'Malley. Several databases will be used to conduct a literature search (APA PsycInfo, CINAHL, PubMed, and Web of Science Core Collection). Authors will participate in screening identified papers to explore the research questions: How do PAEHRs affect HCPs' documentation practices? and What subjective and objective changes to the clinical notes arise after patient access? Only studies that relate to actual use experiences, and not merely prior expectations about PAEHRs, will be selected in the review. Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The Mixed Methods Appraisal Tool will be used to assess the quality of the studies included.ResultsThe results from this scoping review will be presented as a narrative synthesis structured along the key themes of the corpus of evidence. Additional data will be prepared in charts or tabular format. We anticipate the results to be presented in a scoping review at a later date. They will be disseminated at scientific conferences and through publication in a peer-reviewed journal.ConclusionsThis is the first scoping review that considers potential change in documentation after implementation of PAEHRs. The results can potentially help affirm or refute prior opinions and expectations among various stakeholders about the use of PAEHRs and thereby help to address uncertainties. Results may help to provide guidance to clinicians in writing notes and thus have immediate practical relevance to care. In addition, the review will help to identify any substantive research gaps in this field of research. In the longer term, our findings may contribute to the development of shared documentation guidelines, which in turn are central to improving patient communication and safety.International registered report identifier (irrid)PRR1-10.2196/46722.

Project description:BackgroundHistorically, 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.ObjectiveThis 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.MethodsWe 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.ResultsThe 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.ConclusionsThere 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.

Dataset Information

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

Publications

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

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