Patient Perspectives on Gender Identity Data Collection in Electronic Health Records: An Analysis of Disclosure, Privacy, and Access to Care

Abstract

Purpose: In 2015, the Centers for Medicare and Medicaid Services ruled that health organizations comply with additional requirements for electronic health records (EHRs), known as “Meaningful Use,” and develop the capacity to collect gender identity data. Research has established effectiveness of a two-step gender identity question to collect these data. This study examines transgender patient perspectives on the use of a two-step question and experiences with privacy and sensitive disclosures in EHRs and healthcare settings.Methods: Four focus groups (N=30) were conducted in Chicago, Illinois in 2014–2015. Participants were asked to compare two intake forms—one with a two-step question and one with a single question—and discuss experiences with gender identity disclosure, privacy, and access to care. Narratives were transcribed verbatim to identify patterns and themes; the extended case method was used and grounded the data analysis process in the concept of intersectionality.Results: Participants expressed appreciation for improved reliability and competencies that the two-part question may afford. Narratives reveal concerns related to patient privacy, safety, and access because of the contexts in which these data are collected and transmitted. Virtually all participants described situations whereby sensitive gender identity information had been involuntarily disclosed, misinterpreted, or abused, and safety and care were compromised.Conclusion: Participants recognized the potential of the two-part question as a measurement and competency tool, but anticipated new privacy violations and involuntary disclosures. Narratives indicate that effects of sensitive disclosures may vary intersectionally, whereby white participants experienced lesser harms than their immigrant, HIV-positive, and black trans feminine counterparts. Discrimination and privacy violations may occur regardless of a two-part or one-part gender identity question, but increasing these sensitive disclosures within expanding EHR infrastructures may require a range of mechanisms that have flexibility across contexts to safeguard sensitive information and access to care.

A rapid review of gender, sex, and sexual orientation documentation in electronic health records

“…While SGM patients appreciate improved staff competencies and GI questions, many report negative experiences and express concerns with involuntary disclosure, privacy violations, access to care, discrimination, and personal safety. 31 , 33 , 34 Transgender patients have described situations where sensitive gender information has been involuntarily disclosed, misinterpreted or abused, and their safety and care has been compromised. 31 SGM patients may avoid emergency care for fear of discrimination, length of wait, and previous negative experiences.…”

“… 31 , 33 , 34 Transgender patients have described situations where sensitive gender information has been involuntarily disclosed, misinterpreted or abused, and their safety and care has been compromised. 31 SGM patients may avoid emergency care for fear of discrimination, length of wait, and previous negative experiences. 34 Although transgender patients will often self-disclose their GI at some point during their health care encounters, they feel it would be helpful for staff to ask them directly during intake.…”

“…However, better explanations and safeguard mechanisms are needed for the collection of GI data, as patients and providers have differing opinions on who should collect such data and when they should be collected. 30 , 31 …”

Stakeholder Experiences With Gender Identity Data Capture in Electronic Health Records: Implementation Effectiveness and a Visibility Paradox

“…There were eight different EHR systems used among them. Of note, patient perspectives on disclosure of GI in clinical settings is explored in an earlier article (H. M. Thompson, 2016).…”

Potential association between type 1 diabetes mellitus and gender dysphoria

“…First, potential confounders included reliance on problem list diagnoses which are not always up to date. Second, not all TNG youth may report their gender dysphoria due to fear of social stigma and mistreatment . Finally, not all transgender or gender non‐conforming patients seek medical attention, have access to medical care, or have a documented diagnosis of gender dysphoria as there are barriers to having a gender dysphoria code listed in medical charts .…”