Use of chosen names in electronic health records to promote transgender inclusivity

Abstract

Transgender people have a right to be called by their chosen names. However, the current electronic health record (EHR)—even with dramatic changes in recent years—does not allow for proper documentation to accurately and sensitively capture the experiences of transgender patients. This article suggests that EHRs should be modified to allow for distinctions in legal and chosen name fields, recognize the wide-ranging experiences and needs of transgender patients, and promote inclusive, identity-sensitive health care. Healthcare professionals should insist that technology be used in service of the full humanity of their patients.

Centering the perspective of the transgender patient reveals a crucial problem with existing electronic health record (EHR) technology and standards: the presentation of a patient’s chosen name (meaning their lived name which may be different than their legal name) in quotation marks may promote latent transphobia. Consider the fact that for every patient, data fields in the EHR include legal name, date of birth, and health record number.¹ If a patient has a chosen name—and indeed the chosen name should be understood as the patient’s name—there may or may not be a place for the patient to indicate that, depending on the robustness of the EHR. In the absence of a separate data field, the patient’s chosen name is often de facto entered by a practitioner into the patient name field, in quotation marks and next to the patient’s legal name. A simple change to EHRs would promote inclusivity.

For illustration, consider an individual named Jeremiah Smith who is called Jerry. Unless the EHR software includes a field for chosen names, the provider may enter the patient’s name as Jeremiah “Jerry” Smith. The use of quotations in health records indicates that Jerry is not the patient’s real name; it is his preferred name. The patient likely understands that, despite his preferences, from time to time he will be called “Jeremiah” instead of “Jerry.” When that happens, Jerry shrugs and experiences no harm. He understands that the misnaming is a consequence of the way information is stored.

Consider the way the system works in the case of a transgender patient whose chosen name (ie, the name they have chosen and use in everyday life) is different from than their legal name (ie, name assigned on a birth certificate or other government document). Unless the EHR contains two separate fields for “legal name” and “current name,” a patient named David Chen whose legal name is Maria Chen might have a health record that reads as Maria “David” Chen. For providers in a hurry or those who are not well-versed in gender-sensitive care, this could lead to misgendering. For David, being called “Maria” could lead to distress or dysphoria. To be sure, this may not be the impact for all transgender or gender diverse patients, but it will be for many. The failure of the health record to accurately capture a transgender patient’s name also conveys a message that one’s legal name is most important and that anything else is to be treated as a nickname, relegated to quotation marks. The stakes are not the same for Jerry and David. The way data is entered into an EHR disregards David’s lived experience and humanity, making the EHR an obstacle, not an aid, to the best care.

In the last decade, efforts have been made to improve patient outcomes, especially for historically marginalized communities. For example, in 2011, the World Professional Association for Transgender Health suggested that a chosen name with demographic variables and pronouns be included in the EHR. By 2015, the Centers for Medicare and Medicaid Services and the Office of the National Coordinator for Health Information Technology required that all certified EHR demonstrate “meaningful use” by including sexual orientation and gender identity (SOGI) fields.²

In 2022, the National LGBTQIA+ Health Education Center recommended that EHRs be modified to appropriately care for lesbian, gay, bisexual, transgender, queer, intersex, asexual, and all sexual and gender minority (LGBTQIA+) people.³ Suggestions included a more streamlined workflow for collecting SOGI information, identity-sensitive training for staff, and modifications to ensure privacy. An essential suggestion was that clinicians talk with LGBTQIA+ community leaders to better address the needs of LGBTQIA+ patients. For example, clinics that serve a large number of American Indian/Alaska Native patients may consider including the term Two Spirit for both gender and sexual orientation data fields. To be sure, SOGI terms likely will change over time. Thus, it is essential that in addition to chosen names, EHRs can accommodate neopronouns, fluidity in a patient’s identification, and the most current terminology. For patients who may have concerns about SOGI data collection, staff should be prepared to answer questions and provide accurate information about how SOGI information will be used.

The National Academies of Science, Engineering, and Medicine (NASEM) released a consensus study in March 2022 detailing various guidelines for collection of SOGI data. At the core of their suggestions were tenets of inclusiveness, respect for patient autonomy, and intentionality. It was suggested that questions related to data collection represent the experiences of all members of a community by providing options that allow authentic communication of identity.⁴ As such, it is suggested that question wording for measures of gender identity and transgender experience include write-in options, so that patients are not confined to the choices presented in surveys. Space to articulate forms of self-conceptualization, without the boundaries of forced or prescribed identities, is essential for both for patients to see themselves in surveys and other forms of comprehensive data collection and for healthcare professionals to provide the best care.

In January 2023, the Office of the Chief Statistician of the United States implicitly echoed these sentiments, explaining in a set of recommendations for best practices of data collection on sexual orientation and gender identity data in federal statistical surveys that “SOGI measures need to be flexible and adapt over time to maintain usefulness.”⁵ The Office of the Chief Statistician recommended using tested terminology, given the dual goals of comprehensiveness (ie, capturing the full range of human identities) and intelligibility (ie, using terms that are understood by the full range of people who may be completing a survey). Another recommendation was to be flexible in survey design, recognizing that limited, binary responses may force inappropriate choices for survey respondents with multiple and overlapping identities or orientations. For that reason, the Office of the Chief Statistician recommends the use of “mark all that apply” and write-in responses that can then be individually coded; this will improve data quality.⁵ For example, forcing a respondent to choose between “male” and “female” without other options might fail to capture the experience of someone whose gender identity is as a transgender woman. Therefore, the Office of the Chief Statistician recommends more flexible response options like “male,” “female,” and “I use another term,” accompanied by a write-in response. Another possibility would be to add “transgender or gender diverse” as a survey option among many; this is the terminology deployed in the WPATH Standards of Care, Version 8.⁶ To be sure, changing survey terminology often requires years of testing and development. But expanding response options to “male,” “female,” “transgender or gender diverse,” and “I use another term,” has the benefit of being both incremental and reflective of some level of acceptance among leading transgender health advocates.

While recent guidelines have focused heavily on improving the act of SOGI data collection in population surveys, little attention has been paid to how displays of data collection may impact an individual’s experience in a healthcare setting. For example, the impact of correctly presenting a patient’s chosen name is seldom discussed. Given that 33% of transgender people living in the United States report negative experiences with healthcare providers, there is a real need to study whether inclusion of SOGI terms in EHR has, in fact, meaningfully improved patient care.⁷ To ensure that all patients will be addressed correctly, EHR software should be revised to display a patient’s chosen name most prominently or exclusively in the record. This simple change would correct for one aspect of health records that is not hospitable to transgender and gender diverse patients, while also allowing healthcare providers to provide more patient-centered and affirming care.⁸

Skeptics of this modest proposal to alter EHR may point out that alterations to patient name fields could interfere with billing or insurance matters. However, if a patient has not legally changed their name, there is no reason that the system could not display the patient’s chosen name in the care context and use the patient’s legal name for other purposes. Healthcare professionals—nurses, physicians, dieticians, social workers, physical therapists, and other professionals who play a role in patients’ outcomes—should insist that the power of computers be harnessed in service of the full humanity of their patients.

A small number of institutions have already implemented these changes. For example, the University of Iowa Hospitals and Clinics recently undertook systematic changes to allow for chosen name use in their state-wide EHR.¹ These changes incorporated custom additions to EHR functionality so that a modifiable name would be displayed prominently without significant defaults. The authors report that the information technology team spent over 100 hours modifying the system and that 20 hours were spent training medical personnel. While the impact of these changes on the experiences of transgender patients navigating the healthcare system were not reported, failure to use transgender patients’ chosen names has been documented to result in negative experiences that promote distrust of the healthcare system.⁸

To be sure, wide-scale implementation of these changes to EHR will require substantial support and collaboration among technology specialists, healthcare professionals, advocacy organizations, and hospital boards. However, these hurdles should not deter changes to the EHR which ensure that transgender patients are treated with the full dignity they and all patients deserve.

In making these recommendations, I acknowledge my etic perspective as a cisgender woman. I have no personal experience of being a transgender patient within the healthcare system. Rather, these reflections arise out of conversations with a friend who is a transgender man. I heard of the viscerally painful instances of misgendering my friend endured, typically because his health records did not reflect his chosen name. Before then, my cisness and privilege meant that I had never once considered the power of a name in a health record. My identity continues to bias my understanding of injustice for transgender individuals navigating the healthcare system. However, I hope that with intentionality, a willingness to learn, and a desire to engage in conversation, I can contribute to scholarship and conversations that promote inclusivity and justice for members of the transgender community.

FUNDING

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

AUTHOR CONTRIBUTIONS

The author confirms sole responsibility for all aspects of the manuscript preparation.

CONFLICT OF INTEREST STATEMENT

The author has no competing interests to declare.

DATA AVAILABILITY

No new data was generated or analyzed for this research.