Challenges with Accuracy of Gender Fields in Identifying Transgender Patients in Electronic Health Records

Foer, Dinah; Rubins, David; Almazan, Anthony N.; Chan, Kit; Bates, David W.; Hamnvik, Ole-Petter R

doi:10.1007/s11606-019-05567-6

Cited by 14 publications

(20 citation statements)

References 5 publications

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“…Systems-level improvements within existing health care services are needed to address barriers to care for TGD people. This study brings new perspective to the body of work concerning community member and HCP perspectives regarding an ideal gender-affirming services within the healthcare system [ 6 – 18 ].…”

Section: Discussionmentioning

confidence: 99%

“…There is therefore a significant need for research that extends our understanding of contemporary barriers to providing accessible and affirming health services for TGD populations. The existing literature on barriers to gender-affirming health care has identified several key contributors: paucity of trained health care professionals (HCPs) [ 6 – 9 ], uncoordinated care [ 10 , 11 ], unnecessary gatekeeping [ 11 – 13 ], insurance exclusions [ 11 , 14 , 15 ], and electronic health record (EHR) systems that preclude collection of data specific to TGD populations [ 16 – 18 ]. Many of these barriers are amplified in rural areas, and additional challenges have been documented in non-urban settings.…”

Section: Introductionmentioning

confidence: 99%

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Understanding community member and health care professional perspectives on gender-affirming care—A qualitative study

et al. 2021

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Background Transgender and gender diverse (TGD) people experience significant barriers to accessing affirming health services. There is a paucity of literature examining how both community members and health care professionals (HCPs) understand potential causes and solutions for these barriers, particularly in non-urban settings. Objective We present the first systematic examination of perspectives from community members and HCPs regarding barriers to and solutions for promoting access to gender-affirming health care. Design Study activities were conducted through the Plan and Act for Transgender Health (PATH) Project, a health needs assessment of TGD people. Community members in the catchment area were recruited to participate in focus group discussions about access to gender-affirming health care and optimal health service delivery models in March-October 2019. HCPs were recruited to participate in focus group discussions or in-depth interviews about experiences working with TGD clients. Data were analyzed using an inductive grounded theory approach. Setting 25 rural counties in Massachusetts, New York, Connecticut, Vermont, and New Hampshire. Participants Study participants included 61 adult TGD community members and 23 HCPs working in the catchment area. Results Both community members and HCPs spoke of the need for connectedness and linkages among disparate health system components for gender-affirming health care. Participants expressed this priority through calls for systems-level improvements within existing services (e.g., expanded data collection, expanded mental health services, inclusive and affirming health care environments, and TGD staff). They also expressed the need for expanded TGD community outreach and engagement (e.g., incorporation of a patient feedback process, TGD health navigators, and resource mapping). Limitations Findings specifically reflect the perspectives of community members and HCPs in the rural New England area. Furthermore, the study sample was predominantly White non-Hispanic. Conclusion Interventions to achieve accessible gender-affirming health care must address the diverse perspectives and needs of both community members and HCPs.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Understanding community member and health care professional perspectives on gender-affirming care—A qualitative study

et al. 2021

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“…A small sample size also limits the ability to perform quality multivariable regressions and control for confounders due to small overall numbers in each subgroup. Also, by relying on ICD-9 and ICD-10 codes for participant identification, it is possible that we may have missed TGWWH who would have qualified for inclusion but did not have the codes we searched [ 32 ]. Lastly, as a retrospective cohort study, it is impossible to control for unmeasured confounders or to determine causality.…”

Section: Discussionmentioning

confidence: 99%

Effects of Gender-Affirming Hormone Therapy on Progression Along the HIV Care Continuum in Transgender Women

Summers

Huynh

Dunn

et al. 2021

Open Forum Infectious Diseases

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Background Progression along the HIV care continuum has been a key focus for improving outcomes for people living with HIV (PLWH). Transgender women with HIV (TGWWH) have not made the same progress as their cisgender counterparts. Methods All PLWH identifying as transgender women receiving care at our clinic from 1/1/2015 to 12/31/2019 were identified from the electronic health records (EHR) using ICD codes. Demographics, laboratory data, prescription of gender-affirming hormone therapy (GAHT), and visit history were abstracted from the EHR. Retention in care and viral suppression were defined using CDC definitions. The proportions of TGWWH who were consistently retained in care or virally suppressed over time was calculated using a binary response generalized mixed model including random effects and correlated errors. Results Of the 76 PLWH identified by ICD codes, two were excluded for identifying as cisgender and 15 for insufficient records, leaving 59 TGWWH included for analysis. Patients were on average 35 years old, black (86%), with a median CD4 count of 464 cells/µL. There were 13 patients on GAHT at study entry and 31 receiving GAHT at any point during the study period. 55% were virally suppressed at study entry and 86% at GAHT initiation. The proportion of TGWWH who were consistently virally suppressed over time was greater among those receiving GAHT compared to those who were not (p=0.04). Conclusions Rates of viral suppression were significantly greater among TGWWH receiving GAHT when compared to those who were not. More research to evaluate reasons behind this effect are needed.

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“…One of the largest barriers to having valid and reliable outcomes data for transgender individuals is that most national surveys do not include options to identify people who are transgender or gender diverse, instead defaulting to male and female sex markers [ 14 , 15 ]. There are robust data that support the use of a two-step question, i.e., asking both gender identity and sex assigned at birth (Table 1 ), to improve identification of transgender individuals for both clinical care and research [ 16 – 18 ].…”

Section: Identification Of Transgender Individuals For Research and C...mentioning

confidence: 99%

Transgender Individuals and Digital Health

et al. 2022

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Purpose of review The goal of this review is to assess the use of digital technologies to promote the health and well-being of transgender and gender diverse (TGD) people. Recent findings TGD individuals experience numerous health disparities, including low uptake of HIV prevention strategies, such as pre-exposure prophylaxis, increased HIV incidence, and suboptimal HIV-related outcomes. These health disparities are the result of widespread intersectional stigma on the basis of gender identity, gender expression, socioeconomic class, race, and ethnicity, which negatively impact access to general medical and transgender-specific health care. TGD individuals often delay or avoid essential medical services due to fear of discrimination. Clinicians frequently lack training, competence, and skills in transgender medicine, further exacerbating the health disparities faced by TGD people. Digital technologies have been used to improve research and clinical care for TGD populations through various modalities; telemedicine, telehealth and mHealth. Summary Digital health technologies, including HIT-enabled clinical decision support, telehealth, telemedicine, and mHealth, offer innovative ways to improve health care access, improve quality of care, and reduce health disparities for TGD populations, including and beyond HIV outcomes, through enhanced care delivery, clinician education, and enhancing social support networks.

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Challenges with Accuracy of Gender Fields in Identifying Transgender Patients in Electronic Health Records

Cited by 14 publications

References 5 publications

Understanding community member and health care professional perspectives on gender-affirming care—A qualitative study

Understanding community member and health care professional perspectives on gender-affirming care—A qualitative study

Effects of Gender-Affirming Hormone Therapy on Progression Along the HIV Care Continuum in Transgender Women

Transgender Individuals and Digital Health

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