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.
Sexual and gender minority (SGM) people, including agender, asexual, bisexual, gay, gender diverse, genderqueer, genderfluid, intersex, lesbian, nonbinary, pansexual, queer, and transgender people, comprise approximately 10% or more of the U.S. population. Thus, most oncologists see SGM patients whether they know it or not. SGM people experience stigma and structural discrimination that lead to cancer disparities. Because of the lack of systematic and comprehensive data collection, data regarding SGM cancer incidence, outcomes, and treatment responses are limited. Collection of data regarding sexual orientation, gender identity, transgender identity and/or experience, anatomy, and serum hormone concentrations in oncology settings would drastically increase collective knowledge about the impact of stigma and biologic markers on cancer outcomes. Increasing the safety of oncology settings for SGM people will require individual, institutional, and systems changes that will likely improve oncologic care for all patients.
The opinions expressed in this article are those of the authors and do not necessarily reflect the views or policies of the authors' affiliated institutions.
SUPPORTA.B.A. was supported by AHRQ T32 (HS000011).
The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. SUPPORT A.B.A.'s time is supported by an Agency for Healthcare Research and Quality T32HS000011. J.O.-M.'s time is partially supported by the National Institutes of Health (R21MD015878, R21CA237670, R01DA052016).
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