Affirming Transgender Youths’ Names and Pronouns in the Electronic Medical Record

Transgender youths experience significant health disparities compared with their cisgender peers. Recent data suggest that use of gender-affirming language, specifically name and pronouns, in more life contexts is associated with improved mental health outcomes.¹

The use of electronic medical records (EMRs) has become ubiquitous in medicine. However, limitations built into these systems can restrict the provision of gender-affirming care. In 2015, the Office of the National Coordinator for Health Information Technology began recommending that EMRs collect gender identity data to be certified for meaningful use.² Many practices have moved to the “2-step” model of asking patients about both their gender identity and sex assigned at birth. Unfortunately, neither of these questions provides information about the name and pronouns a patient would like to use, which are critical to ensuring that a clinical encounter is respectful and affirming.^3-5 A clear gap exists in the literature as there is a limited understanding of transgender youths’ preferences regarding name and pronoun documentation in the EMR. The objectives of this study were to: (1) assess transgender youths’ preferences regarding EMR-wide name and pronoun documentation and (2) investigate how these preferences differ by demographic and gender-related characteristics.

A survey that included items investigating youths’ preferences regarding EMR-wide name and pronoun documentation was administered to transgender youths aged 12 to 26 years who were accessing care in a specialty gender clinic (Table 1). This study was approved by the University of Pittsburgh Institutional Review Board, with waiver of permission for youths younger than 18 years; verbal assent was obtained from each participant prior to participation. In total, 211 youths were approached about participating in the study. Six individuals were screened out after indicating their gender identity was only cisgender. Of those who remained, 204 completed the survey for a participation rate of 99.5%. To examine responses by specific patient characteristics, χ² and Fisher exact tests were used. Data analyses were conducted using Stata statistical software, version 14.2 (StataCorp).

Of the 204 participants surveyed, 138 of 200 (69%) used a name different from their legal name. Most of the youths (156 of 198 [79%]) (Table 1) reported they would prefer to have both their name and pronouns documented EMR-wide. While 34 of 37 nonbinary youths (92%) indicated that they would like their name documented, this was true for only 28 of 42 transfeminine youths (67%) (P = .007); similar results were seen for pronouns (Table 2). Interest in name and pronoun documentation also varied significantly with whether youths were “out to everyone” vs “out to few or no one.” No differences were seen regarding name or pronoun documentation preferences by age, race/ethnicity, or perceived level of parental support. Among the 7 youths who did not desire EMR-wide name and pronoun documentation, 6 (86%) noted that because they already “passed” they did not feel name or pronoun documentation was necessary. Only one participant raised concerns about confidentiality as the reason they did not desire name or pronoun documentation occur. Despite these stated preferences, only 17 of 197 youths (9%) indicated that they were always or often asked outside of specialty gender centers if they wanted to have their name and pronouns documented in the EMR.

Our study findings suggest that most transgender youths accessing care in a specialty gender center desire EMR-wide name and pronoun documentation despite this being infrequently offered in clinical encounters. We identified important variation within the sample by gender identity and how “out” individuals were. Perhaps transfeminine patients may be less likely to desire name and pronoun documentation because of increased pressure to conform to traditional gender norms, but whether this is moderated by “outness” warrants further investigation. Although the majority of youths desire EMR-wide documentation, it remains important to discuss the implications this documentation has on confidentiality, particularly with regard to parental access to medical records for individuals younger than 18 years.⁶

While limited by the fact that these data were obtained from a convenience sample of transgender youths with access to gender-affirming care, they illustrate that most transgender youths desire opportunities for EMR-wide name and pronoun documentation. To better support this vulnerable group of youths, health systems and EMRs should allow for EMR-wide name and pronoun documentation, even when a patient has not legally changed their name.

Accepted for Publication: August 20, 2019.

Corresponding Author: Gina M. Sequeira, MD, MS, Division of Adolescent and Young Adult Medicine, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, 120 Lytton Ave, Ste M60, Pittsburgh, PA 15213 (gina.sequeira@chp.edu).

Published Online: February 24, 2020. doi:10.1001/jamapediatrics.2019.6071

Author Contributions: Drs Sequeira and Ray had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: All authors.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Sequeira, Kidd, Garofalo.

Critical revision of the manuscript for important intellectual content: Sequeira, Kidd, Coulter, Miller, Ray.

Statistical analysis: Sequeira, Coulter, Miller.

Obtained funding: Miller.

Administrative, technical, or material support: Miller, Garofalo.

Supervision: Miller, Garofalo, Ray.

Conflict of Interest Disclosures: Dr Sequeira reported receiving grants from the National Institutes of Health/National Institutes of Child Health and Human Development during the conduct of the study. Dr Kidd reported receiving grants from the National Center for Advancing Translational Sciences of the National Institutes of Health during the conduct of the study. No other disclosures were reported.

Funding/Support: This work was funded by the following grants: T32 HD71834-5 (principal investigator: Terence S. Dermody, MD), T32 HD087162 (principle investigator: Dr Miller), K01AA027564 (principal investigator: Dr Coulter), and TL1TR001858 (principal investigator: Wishwa N. Kapoor, MD, MPH) from the National Institutes of Health.

Role of the Funder/Sponsor: The funding organization had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.