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

Author:

Kronk Clair A1ORCID,Everhart Avery R23ORCID,Ashley Florence34ORCID,Thompson Hale M5,Schall Theodore E6,Goetz Teddy G7,Hiatt Laurel8,Derrick Zackary9,Queen Roz10,Ram A11,Guthman E Mae312,Danforth Olivia M13,Lett Elle314,Potter Emery15,Sun Simón(e) D31617,Marshall Zack18ORCID,Karnoski Ryan319

Affiliation:

1. Center for Medical Informatics, Yale University School of Medicine, New Haven, Connecticut, USA

2. Population, Health, and Place Program, Spatial Sciences Institute, University of Southern California, Los Angeles, California, USA

3. Center for Applied Transgender Studies, Chicago, Illinois, USA

4. Faculty of Law and Joint Centre for Bioethics, University of Toronto, Toronto, Ontario, Canada

5. Department of Psychiatry and Behavioral Science, Rush University Medical Center, Chicago, Illinois, USA

6. Berman Institute of Bioethics, Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA

7. Department of Psychiatry, University of Pennsylvania, Philadelphia, Pennsylvania, USA

8. University of Utah School of Medicine, Salt Lake City, Utah, USA

9. School of Public Health and Social Policy, University of Victoria, Victoria, British Columbia, Canada

10. Health Information Science, School of Human and Social Development, University of Victoria, Victoria, British Columbia, Canada

11. Program in Computational Biology and Bioinformatics, Yale University, New Haven, Connecticut, USA

12. Princeton Neuroscience Institute, Princeton University, Princeton, New Jersey, USA

13. Department of Family Medicine, Samaritan Health Services Geary St. Clinic, Albany, Oregon, USA

14. Department of Biostatistics, Epidemiology, and Informatics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA

15. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada

16. Center for Neural Science, New York University, New York, New York, USA

17. Department of Neuroscience and Physiology, Neuroscience Institute, NYU Grossman Medical Center, New York, New York, USA

18. School of Social Work, McGill University, Montreal, Quebec, Canada

19. School of Social Welfare, University of California, Berkeley, Berkeley, California, USA

Abstract

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.

Funder

Agency for Healthcare Research and Quality

National Institute on Drug Abuse

Publisher

Oxford University Press (OUP)

Subject

Health Informatics

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