Abstract
This survey study assesses preferences concerning name and pronoun documentation in the electronic medical record and investigates how these preferences differ by demographic and gender-related characteristics among transgender youths seeking care at a specialty gender clinic.
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.3,4,5 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.
Methods
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).
Table 1. Survey Constructs and Measures.
| Construct | Assessment Item | Response Options | No. (%) |
|---|---|---|---|
| Gender identity | How do you describe your gender identity? | Transmasculine | 121 (59) |
| Transfeminine | 43 (21) | ||
| Nonbinarya | 40 (20) | ||
| Age | How old are you? | <18 y | 105 (56) |
| ≥18 y | 83 (44) | ||
| Race/ethnicity | How do you identify your race/ethnicity? | White | 166 (86) |
| Nonwhiteb | 26 (14) | ||
| Outness | Outside of health care, how out are you about your gender identity right now? | Out to everyone | 82 (42) |
| Out to most | 68 (35) | ||
| Out to some | 28 (14) | ||
| Out to few or no one | 17 (9) | ||
| Parental support | On a scale of 1 to 10, how supportive would you say your most supportive parent/legal guardian is of your transition (1 being not supportive at all and 10 being extremely supportive)? | 10 | 37 (20) |
| 7-9 | 72 (39) | ||
| 1-6 | 77 (41) | ||
| Desire EMR-wide documentationc | Would you want to have a note made in your EMR so all members of the health care team outside of the gender clinic (eg, emergency department staff, people drawing blood, schedulers) would be able to see the name or pronouns you use? | Name and pronouns | 156 (79) |
| Name not pronouns | 7 (4) | ||
| Pronouns not name | 5 (3) | ||
| Not sure | 23 (12) | ||
| No | 7 (4) |
Abbreviation: EMR, electronic medical record.
Participants who selected nonbinary, genderqueer, gender fluid, gender nonconforming, agender, demiboy or demiman, demigirl or demiwoman, gender variant, androgyne, gender questioning, or 2-spirit were coded as nonbinary.
Response options included black, Hispanic/Latino/a/x, Asian, multiracial, and other.
Percentages may add up to more than 100% because of rounding.
Results
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.
Table 2. Bivariate Analysis of Factors Associated With Preference for EMR-wide Name and Pronoun Documentation Among 204 Respondents.
| Demographic Characteristic | Desire EMR-wide Name Documentation | Desire EMR-wide Pronoun Documentation | ||
|---|---|---|---|---|
| No. (%) | P Value | No. (%) | P Value | |
| Gender identity | ||||
| Transmasculine | 101 (85) | .007a | 100 (84) | .003a |
| Transfeminine | 28 (67) | 27 (64) | ||
| Nonbinary | 34 (92) | 34 (92) | ||
| Age, y | ||||
| <18 | 87 (84) | .29 | 85 (82) | .48 |
| ≥18 y | 62 (78) | 62 (78) | ||
| Race/ethnicity | ||||
| White | 131 (81) | .79 | 129 (80) | .55 |
| Nonwhite | 22 (85) | 22 (85) | ||
| Gender-related characteristics | ||||
| Outness | ||||
| Out to everyone | 71 (88) | .02a | 71 (88) | .06 |
| Out to most | 57 (88) | 54 (83) | ||
| Out to some | 19 (68) | 20 (71) | ||
| Out to few or no one | 11 (65) | 11 (65) | ||
| Parental supportb | ||||
| 10 | 61 (83) | .95 | 62 (83) | .39 |
| 7-9 | 59 (83) | 59 (83) | ||
| 1-6 | 30 (81) | 27 (73) | ||
Abbreviation: EMR, electronic medical record.
Statistically significant (P < .05.).
Rated on a scale of 1 to 10, with 1 indicating not supportive at all and 10, extremely supportive.
Discussion
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.
References
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