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.

Keywords: bioethics; electronic health records; gender and sexual minorities; transgender persons.

Figure 1.

The current state of trans healthcare education, wherein patients are the primary educators of providers. (A) The percentage of medical students among 365 Canadian medical schools who felt knowledgeable enough to care for transgender patients. (B) Percentage of transgender patients who reported having a negative experience with a healthcare provider in the 2015 U.S. Transgender Survey (USTS). (C) The number of LGBTQ education hours and estimated percentage of transgender education hours,^, based on percentage hours in other disciplines, compared with hours in nutrition and microbiology.^, The total number of hours was conservatively estimated based on 1100 hours of instruction in the first 2 years of medical school. We estimate that approximately 18.3 minutes of medical education is spent on transgender-related care, care which is potentially life-saving for millions of people.

Figure 2.

A potential question to ask an individual their pronouns. Individuals may use or be comfortable with multiple sets of pronouns, hence “choose all that apply.” Neopronouns were added based on the 2 most recent Gender Censuses (2020, 2021), in which over 24 000 and 44 000 nonbinary people, respectively, were queried about their terminological usages.^, Pronoun sets could be shifted in or out based on usage statistics on a local level over a period of time. Having a pronoun not listed could alert the medical provider about pronoun usage prior to the encounter. Selecting “prefer not to respond; prefer not to disclose” or the like could trigger a series of potential privacy options, wherein the patient could determine pronouns for various kinds of healthcare encounters depending on safety, presentation, etc.

Figure 3.

Examples of 2 ways to ask for identification of transgender identity: direct method (1-step) and indirect method (2-step); indicates different options that may be used to similar effect in certain circumstances. In general, it should be clear that this information is not a proxy for karyotype or organ inventory, which should be ascertained independently (see “Additional Considerations”). However, it is important to include for providers, researchers, and patients, as patients might not have karyotype- or organ inventory–based knowledge and tests may be unaffordable, unavailable, or unnecessarily invasive. Note 1: For neonates and infants for which gender identity has not yet developed, a medical provider could enter “unknown,” “uncertain,” “undifferentiated,” or “none.” Note 2: This may only be appropriate in some jurisdictions as the original birth certificate may no longer officially exist (such as in Germany). It does resolve ambiguity in a situation wherein a patient has been issued a new birth certificate with an updated gender marker. Additionally, there may be values and options for this question that differ significantly by jurisdiction. Note 3: “X” is allowed in some jurisdictions, such as in New York City, Washington DC, New Jersey, California, etc. and has been recently approved for federal documentation in the U.S. While occasionally intersex is considered a gender identity or as an assigned gender at birth, this is commonly thought of as inappropriate, because intersex people can have many different gender identities or assigned genders at birth (some intersex people do identify their gender identity as “intersex” or “hermaphrodite” [typically as a form of reclamation], but these identifications can adequately be covered by “A gender not listed [please specify]” in most cases). For more information on intersex-inclusive question design, see “Intersex Data Collection: Your Guide to Question Design.” It is also important to note that birth certificates may change to not include gender markers or may not be consistent from jurisdiction to jurisdiction.^,, Therefore, a two-step is simply a better proxy to gender- and/or sex-related information than a one-step, which may be replaced in the future with more accurate models incorporating information like hormonal milieau.