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 E D Sun, Zack Marshall, Ryan Karnoski
Author Information
Clair A Kronk: Center for Medical Informatics, Yale University School of Medicine, New Haven, Connecticut, USA. ORCID
Avery R Everhart: Population, Health, and Place Program, Spatial Sciences Institute, University of Southern California, Los Angeles, California, USA. ORCID
Florence Ashley: Center for Applied Transgender Studies, Chicago, Illinois, USA. ORCID
Hale M Thompson: Department of Psychiatry and Behavioral Science, Rush University Medical Center, Chicago, Illinois, USA.
Theodore E Schall: Berman Institute of Bioethics, Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA.
Teddy G Goetz: Department of Psychiatry, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Laurel Hiatt: University of Utah School of Medicine, Salt Lake City, Utah, USA.
Zackary Derrick: School of Public Health and Social Policy, University of Victoria, Victoria, British Columbia, Canada.
Roz Queen: Health Information Science, School of Human and Social Development, University of Victoria, Victoria, British Columbia, Canada.
A Ram: Program in Computational Biology and Bioinformatics, Yale University, New Haven, Connecticut, USA.
E Mae Guthman: Center for Applied Transgender Studies, Chicago, Illinois, USA.
Olivia M Danforth: Department of Family Medicine, Samaritan Health Services Geary St. Clinic, Albany, Oregon, USA.
Elle Lett: Center for Applied Transgender Studies, Chicago, Illinois, USA.
Emery Potter: Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.
Simón E D Sun: Center for Applied Transgender Studies, Chicago, Illinois, USA.
Zack Marshall: School of Social Work, McGill University, Montreal, Quebec, Canada. ORCID
Ryan Karnoski: Center for Applied Transgender Studies, Chicago, Illinois, USA.
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.
