Experiences of Transgender People Reviewing Their Electronic Health Records, a Qualitative Study

Abstract

Background: The 21st Century Cures Act and the OpenNotes movement have brought patients immediate access to their electronic health records (EHRs). The experiences of marginalized people, including transgender people, accessing and reviewing their EHRs could inform documentation guidelines to improve patient-clinician rapport and reduce harm. Objective: To investigate the experiences of transgender people reviewing EHRs. Design: Qualitative study using community-engaged research and an interpretive description methodology. Participants were recruited via social media, snowball sampling was employed, and purposive sampling was used to ensure diversity in terms of age, race/ethnicity, and other factors. In focus groups, participants were asked to discuss their experiences reviewing their EHRs and, for those participants who were clinicians, their experiences reviewing other clinicians’ documentation. Participants: Thirty transgender adults aged 20 to 67 years, including 10 clinicians. Approach: Digital audio-recordings of focus groups were transcribed verbatim. Content was analyzed to identify emerging essential elements and analysis was continued until no new themes emerged (i.e., saturation). Key Results: Four themes were noted. (1) Using the wrong name, pronoun, or gender marker for patients is common in the EHR, erodes trust, and causes trauma. (2) Various aspects of clinicians’ notes contradict, blame, or stigmatize patients, across multiple axes of oppression. (3) Limitations of EHR capabilities create barriers to quality care. (4) Certain medical customs set the stage for marginalizing, objectifying, and pathologizing transgender people. Conclusions: Transgender people experience harm via various aspects of EHR documentation, suggesting that changes must be made to improve patient-clinician relationships and reduce ill-effects for patients.