Patient perspectives on gender identity and anatomy data collection in electronic health records: a qualitative study

Documentation of gender identity (GI) and anatomy data in the electronic health record (EHR) is a proposed standard of care for transgender populations. However, there is limited research on implementation of proposed best practices, particularly anatomy data collection. This study aims to characterize factors that influence patient preferences and comfort around the collection and documentation of GI and anatomy in EHRs.

From November 2023 to January 2024, 17 one-on-one, semi-structured virtual interviews were conducted with transgender adults residing in the Metropolitan New York area. Transcriptions were analyzed using inductive thematic analysis.

Themes clustered around comfort and preferences for data collection processes and outcomes. Factors that influenced preferences and comfort around anatomy data were distinct from those impacting GI documentation preferences and comfort. The tension between the categories of GI and sex assigned at birth impacted anatomy data documentation preferences. Clinical context emerged as a consistent factor that impacts both preferences and comfort of GI and anatomy data documentation.

GI data collection efforts in clinical settings must consider the implication of anatomy data collection when determining data collection best practice methodologies. Anticipated and experienced stigma remain significant hurdles to patient comfort and willingness to collect GI and anatomy data, and their impact on actual data collection should be further elucidated among diverse gender identities. Clinical data collection methods, tools, and education warrant ongoing research investment to further elucidate best practices.