Transgender data collection in the electronic health record: Current concepts and issues

  • Clair A. Kronk
  • , Avery R. Everhart
  • , Florence Ashley
  • , Hale M. Thompson
  • , Theodore E. Schall
  • , Teddy G. Goetz
  • , Laurel Hiatt
  • , Zackary Derrick
  • , Roz Queen
  • , A. Ram
  • , E. Mae Guthman
  • , Olivia M. Danforth
  • , Elle Lett
  • , Emery Potter
  • , Simón D. Sun
  • , Zack Marshall
  • , Ryan Karnoski

Research output: Contribution to journalArticlepeer-review

157 Scopus citations

Abstract

There are over 1 million transgender people living in the United States, and 33% report negative experiences with a healthcare provider, many of which are connected to data representation in electronic health records (EHRs). We present recommendations and common pitfalls involving sex- and gender-related data collection in EHRs. Our recommendations leverage the needs of patients, medical providers, and researchers to optimize both individual patient experiences and the efficacy and reproducibility of EHR population-based studies. We also briefly discuss adequate additions to the EHR considering name and pronoun usage. We add the disclaimer that these questions are more complex than commonly assumed. We conclude that collaborations between local transgender and gender-diverse persons and medical providers as well as open inclusion of transgender and gender-diverse individuals on terminology and standards boards is crucial to shifting the paradigm in transgender and gender-diverse health.

Original languageEnglish
Pages (from-to)271-284
Number of pages14
JournalJournal of the American Medical Informatics Association
Volume29
Issue number2
DOIs
StatePublished - 1 Feb 2022
Externally publishedYes

Keywords

  • bioethics
  • electronic health records
  • gender and sexual minorities
  • transgender persons

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