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

Health Educ Behav. 2021 Feb;48(1):93-101. doi: 10.1177/1090198120963102. Epub 2020 Oct 16.


Background: Advocates have endorsed transgender visibility via gender identity (GI) data capture with the advent of the Affordable Care Act and electronic health record (EHR) requirements. Visibility in data in order to enumerate a population contrasts with ways in which other LGBT and public health scholars have deployed these concepts.

Aims: The article aims to assess the effectiveness of GI data capture in EHRs and implications for trans health care quality improvements and research.

Method: Semistructured interviews were conducted with 27 stakeholders from prominent gender-affirming care providers across the United States. A range of informants shared their experiences with GI data capture. Interviews were coded, themes were identified, and the extended case method was used to contextualize data in relation to key concepts.

Results: Data capture is effective for increasing patient counts and making quality improvements but limited in terms of enhancing gender-affirming care depending on provider size, type, and competencies. Many challenges were highlighted regarding use of GI data for research, sharing GI data across systems, as well the ways data capture erases the dynamism of GI. These issues create conditions for limited kinds of disclosure, capture of particular categories, and care and treatment barriers.

Discussion: Stakeholders exposed a visibility paradox emerging from GI data capture. While data fields are created to increase the visibility of trans persons in medical settings and in health research, they work to increase the visibility of some while reducing the visibility of other gender diverse persons, including trans, nonbinary, and cisgender.

Conclusion: New approaches are needed to explore implications of GI data standardization and the logics of health care in the face of gender expansiveness.

Keywords: community health; general terms; health informatics; health policy; population groups; qualitative methods; sexual and gender minorities; systems science.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Electronic Health Records
  • Female
  • Gender Identity*
  • Humans
  • Male
  • Patient Protection and Affordable Care Act
  • Transgender Persons*
  • United States