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Transgender Data Collection in the Electronic Health Record (EHR): Current Concepts and Issues

Author

Listed:
  • Kronk, Clair
  • Everhart, Avery R.

    (University of Southern California)

  • Ashley, Florence
  • Thompson, Hale
  • Schall, Theodore E.
  • Goetz, Teddy G.
  • Hiatt, Laurel
  • Derrick, Zackary
  • Queen, Roz
  • Ram, A

Abstract

There are over one 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.

Suggested Citation

  • Kronk, Clair & Everhart, Avery R. & Ashley, Florence & Thompson, Hale & Schall, Theodore E. & Goetz, Teddy G. & Hiatt, Laurel & Derrick, Zackary & Queen, Roz & Ram, A, 2021. "Transgender Data Collection in the Electronic Health Record (EHR): Current Concepts and Issues," SocArXiv qnc2g, Center for Open Science.
    • Handle: RePEc:osf:socarx:qnc2g
    DOI: 10.31219/osf.io/qnc2g
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    Cited by:

    1. Hale M. Thompson & Clair A. Kronk & Ketzel Feasley & Paul Pachwicewicz & Niranjan S. Karnik, 2021. "Implementation of Gender Identity and Assigned Sex at Birth Data Collection in Electronic Health Records: Where Are We Now?," IJERPH, MDPI, vol. 18(12), pages 1-12, June.
    2. Everhart, Avery R. & Ferguson, Laura & Wilson, John P., 2022. "Construction and validation of a spatial database of providers of transgender hormone therapy in the US," Social Science & Medicine, Elsevier, vol. 303(C).

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