Trans Care Begins at… the Software?

Trans and nonbinary care-seekers and their families largely judge a facility’s preparedness and interest in providing trans-friendly care by how often we are addressed by the correct name and pronoun as a signifier of basic dignity and recognition. Being called by the wrong name or pronoun can do immediate harm as humiliation, rejection, and by revealing the person’s gender modality (something they may keep private) or previous name to others, especially in public areas. It also sends a strong message that the clinic or the individual staff member are ignorant of or even hostile to trans and nonbinary communities. Experiences of humiliation or danger and perceptions of clinical incompetence and hostility lead to degraded care outcomes and reduced care-seeking, ultimately contributing to population-level differences like cancer survival rates.

One of the biggest hurdles in generating trans-serving policies at the clinic level has been the electronic health record. While the state where I live and the university where I work have both created systems to recognize trans and nonbinary people in our institutional names and gender markers, the vendors who produce electronic health records have not followed suit, leaving clinics in the position to develop ad hoc workarounds that invariably fall short. The clinics where I have worked have used physical sticky notes, digital sticky notes, nickname fields, and other workarounds, all of which have a high rate of failure because they depend on staff members to depart from normal workflow and may not be visible to all staff members or at all times. For instance, when a pop-up is visible to licensed clinicians but not administrative staff, a person will be misgendered in the waiting room. When a provider is in the habit of opening a chart only after greeting the patient, they will always receive the information too late. If a staff member is not in the habit of double-checking the name field on a chart for every single patient, they may not receive the information at all. Often, I hear from staff members (particularly in high-volume settings) that they do not have time to even open the chart until after an encounter.

Under the current pandemic, the impact is even bigger. When COVID-19 first emerged, health advocates warned that trans and nonbinary people might be at increased risk of contracting COVID-19 due to disproportionate poverty, houselessness, incarceration, uninsured status, and exclusion from formal economies leading to informal labor, where worker protections never apply. COVID-19 has clearly impacted different populations very differently, but trans people, systematically invisible in health records, are not viewed as a hard-hit population. There are no records available of how our community is impacted by COVID-19, so relief projects are not targeting us.

There are many companies that create electronic health records software, and few have made any effort to support clinics in providing adequate care to trans people, even after the American Medical Association’s 2019 establishment of standards for trans-inclusive EHRs.

The following policy brief is a four-page pamphlet outlining the need for trans-inclusive electronic health records, the design requirements for such a system, and how data flow should work. This brief was developed for staff at the University of California, Santa Barbara. Please feel free to use, modify, borrow, and otherwise make it your own, and always check in with trans and nonbinary people in your service area about whether these policies meet their needs.

I love to hear from people who have used the resources I’ve developed. What works, what doesn’t work? If you’d like to support my work financially you can donate here.