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

Abstract

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.

LGBTQ+ health and anaesthesia for obstetric and gynaecological procedures

“…Review of existing literature on the presence of LGBTQ2SI health topics in medical school curriculum and residency or fellowship training materials demonstrates significant knowledge gaps [11,12]. A similar trend in knowledge gaps exist in anaesthesiology training programmes.…”

The Inclusion of Sex and Gender Beyond the Binary in Toxicology

“…Improvements with regard to characterizing and reporting on the frequency of intersex variations as well as the inclusion of intersex individuals in larger studies can help us to identify health disparities. Questionnaires including adequate gender (Adams et al, 2017;Garrett-Walker and Montagno, 2021;Kronk et al, 2021;Miyagi et al, 2021) and sex of the subject population can improve and enhance stratification of populations in data analysis related to health endpoints and environmental exposures, but should be done in collaboration with advocacy groups that strive to represent intersex individuals, such as the Intersex Society of North America, InterACT, or The Intersex Justice Project (Bolte et al, 2021;Richardson, 2022). The inclusion of advocacy groups in study design is crucial to ensuring equity and respect in research design.…”

Sex trouble: Sex/gender slippage, sex confusion, and sex obsession in machine learning using electronic health records

“… 12 , 13 , 16 , 20 However, many resources suggest using sexed terms for gender identity (e.g., male, female, transgender male), demonstrating sex/gender slippage and leading to confusion for transgender and non-binary people about how to answer. 20 , 75 , 76 Kronk et al. provide an alternative that is likely clearer for transgender people.…”

“…78 , 79 The most commonly cited method of moving toward richer representations is the use of organ/anatomic inventories. 20 There are also design approaches that can both establish strong defaults with flexibility and the ability to confirm or update variables as needed, easing some of the burden for data entry. 20 , 53 We will discuss increasing data richness in more detail in the recommendations section.…”

“…Previous literature about EHRs and transgender people advocate for the importance of collecting SOGI information and applaud its increased integration into new and existing systems. [12][13][14][15][16][17][18][19][20][21][22] However, most of these works also assume that sex is a coherent concept with a consistent meaning, even for transgender people. Work across many disciplines, including transgender studies, suggests otherwise and casts doubt upon the legitimacy of assumptions around what sex is, let alone how EHR systems record it.…”