Dataset Information

Pediatric sexual orientation and gender identity data collection in the electronic health record.

ABSTRACT: The systematic documentation of sexual orientation and gender identity data in electronic health records can improve patient-centered care and help to identify and address health disparities affecting sexual and gender minority populations. Although there are existing guidelines for sexual orientation and gender identity data among adult patients, there are not yet standard recommendations for pediatric patients. In this article, we discuss methods that pediatric primary care organizations can use to collect and document sexual orientation and gender identity information with children and adolescents in electronic health records. These recommendations take into consideration children's developmental stages, the role of caregivers, and the need to protect the privacy of this information. We also focus on the current limitations of electronic health records in capturing the nuances of sexual and gender minority identities and make suggestions for addressing these limitations.

SUBMITTER: Goldhammer H

PROVIDER: S-EPMC9196694 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature

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Pediatric sexual orientation and gender identity data collection in the electronic health record.

Goldhammer Hilary H Grasso Chris C Katz-Wise Sabra L SL Thomson Katharine K Gordon Allegra R AR Keuroghlian Alex S AS

Journal of the American Medical Informatics Association : JAMIA 20220601 7

The systematic documentation of sexual orientation and gender identity data in electronic health records can improve patient-centered care and help to identify and address health disparities affecting sexual and gender minority populations. Although there are existing guidelines for sexual orientation and gender identity data among adult patients, there are not yet standard recommendations for pediatric patients. In this article, we discuss methods that pediatric primary care organizations can u ...[more]

PMID: 35396995

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Project description:BackgroundThe Institute of Medicine and The Joint Commission have recommended asking sexual orientation and gender identity (SOGI) questions in clinical settings and including such data in Electronic Health Records (EHRs). This is increasingly viewed as a critical step toward systematically documenting and addressing health disparities affecting lesbian, gay, bisexual, and transgender (LGBT) people. The U.S. government is currently considering whether to include SOGI data collection in the Stage 3 guidelines for the incentive program promoting meaningful use of EHR. However, some have questioned whether acceptable standard measures to collect SOGI data in clinical settings exist.MethodsIn order to better understand how a diverse group of patients would respond if SOGI questions were asked in primary care settings, 301 randomly selected patients receiving primary care at four health centers across the U.S. were asked SOGI questions and then asked follow-up questions. This sample was mainly heterosexual, racially diverse, and geographically and regionally broad.ResultsThere was a strong consensus among patients surveyed about the importance of asking SOGI questions. Most of the LGBT respondents thought that the questions presented on the survey allowed them to accurately document their SOGI. Most respondents--heterosexual and LGBT--answered the questions, and said that they would answer such questions in the future. While there were some age-related differences, respondents of all ages overwhelmingly expressed support for asking SOGI questions and understood the importance of providers' knowing their patients' SOGI.ConclusionsGiven current deliberations within national health care regulatory bodies and the government's increased attention to LGBT health disparities, the finding that patients can and will answer SOGI questions has important implications for public policy. This study provides evidence that integrating SOGI data collection into the meaningful use requirements is both acceptable to diverse samples of patients, including heterosexuals, and feasible.

Project description:BackgroundThe healthcare disparities of sexual and gender minority (SGM) people are globally recognised. Research from the United States has advocated for sexual orientation and gender identity (SOGI) information capture via the electronic medical record (EMR) to support the generation of knowledge regarding SGM people's healthcare needs and the appropriate care for this population. In November 2022, The Royal Melbourne Hospital (RMH) enabled the SOGI capture EMR functionality. The purpose of this study is to understand how SOGI capture can inform the person-centred care of SGM people by way of interviews with SGM patients and RMH staff. It quantitatively describes RMH SOGI capture throughout the study period to provide additional insights.MethodsThis study uses an embedded mixed-methods design: qualitative data are primary and quantitative data are supplementary. SOGI capture uptake at RMH informed the recruitment of SGM patients (n = 11) and RMH staff (n = 13). Participants were engaged in in-depth semi-structured interviews that were then reflexively thematically analysed. SOGI capture throughout the study period (8th November 2022 to 23rd September 2024) was quantitatively described via frequency and percentage and then analysed in relation to the qualitative results to provide additional insights.ResultsInterviewed participants considered SOGI capture a significant step toward providing person-centred care for SGM people. However, participants shared problems in SGM healthcare and expressed that for SOGI capture to benefit SGM patients, staff must be aware of not only SOGI capture but also SGM healthcare issues. Other recommendations for SOGI capture included patient informed consent; patient preferences accurately captured; and mandatory SOGI questions to normalise this process. During the study period 272,672 patients were admitted to RMH, of which there were 2,174 (0.8%) SGM SOGI captures; 2,000 (0.7%) captured a gender identity that was not 'male' or 'female' and 1,113 captured a sexual orientation that was not 'straight' or 'not reported' (0.4%). These numbers demonstrate SGM patients' minority status and signal the need for more staff and patient awareness of SOGI capture and mandatory SOGI questions to increase the representation and knowledge of this population and ultimately improve its care provision. A diversity of identifiers for this population was captured (10 sexual orientation identifiers and 14 gender identity identifiers) which demonstrate the significance of recognising SGM patient preferences.ConclusionThis study presented an in-depth exploration of how SOGI capture can inform the person-centred care of SGM people if staff are aware of SGM healthcare issues, and if SOGI capture is done according to patient preference and consent and is normalised through mandatory questions. Insights and recommendations generated from this study can inform local and international policies and processes in the implementation of SOGI capture such that it can inform person-centred care for SGM people.

Dataset Information

Pediatric sexual orientation and gender identity data collection in the electronic health record.

Publications

Pediatric sexual orientation and gender identity data collection in the electronic health record.

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