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

被引：131

作者：

Kronk, Clair A. ^{[1
]}

Everhart, Avery R. ^{[2
,3
]}

Ashley, Florence ^{[3
,4
,5
]}

Thompson, Hale M. ^{[6
]}

Schall, Theodore E. ^{[7
]}

Goetz, Teddy G. ^{[8
]}

Hiatt, Laurel ^{[9
]}

Derrick, Zackary ^{[10
]}

Queen, Roz ^{[11
]}

Ram, A. ^{[12
]}

Guthman, E. Mae ^{[3
,13
]}

Danforth, Olivia M. ^{[14
]}

Lett, Elle ^{[3
,15
]}

Potter, Emery ^{[16
]}

Sun, Simon E. D. ^{[3
,17
,18
]}

Marshall, Zack ^{[19
]}

Karnoski, Ryan ^{[3
,20
]}

机构：

[1] Yale Univ, Ctr Med Informat, Sch Med, New Haven, CT 06510 USA

[2] Univ Southern Calif, Populat Hlth & Pl Program, Spatial Sci Inst, Los Angeles, CA 90007 USA

[3] Ctr Appl Transgender Studies, Chicago, IL USA

[4] Univ Toronto, Fac Law, Toronto, ON, Canada

[5] Univ Toronto, Joint Ctr Bioeth, Toronto, ON, Canada

[6] Rush Univ, Dept Psychiat & Behav Sci, Med Ctr, Chicago, IL 60612 USA

[7] Johns Hopkins Univ, Bloomberg Sch Publ Hlth, Berman Inst Bioeth, Dept Hlth Policy & Management, Baltimore, MD USA

[8] Univ Penn, Dept Psychiat, Philadelphia, PA 19104 USA

[9] Univ Utah, Sch Med, Salt Lake City, UT 06510 USA

[10] Univ Victoria, Sch Publ Hlth & Social Policy, Victoria, BC, Canada

[11] Univ Victoria, Sch Human & Social Dev, Hlth Informat Sci, Victoria, BC, Canada

[12] Yale Univ, Program Computat Biol & Bioinformat, New Haven, CT 06510 USA

[13] Princeton Univ, Princeton Neurosci Inst, Princeton, NJ 08544 USA

[14] Samaritan Hlth Serv Geary St Clin, Dept Family Med, Albany, OR USA

[15] Univ Penn, Dept Biostat Epidemiol & Informat, Perelman Sch Med, Philadelphia, PA 19104 USA

[16] Univ Toronto, Lawrence S Bloomberg Fac Nursing, Toronto, ON, Canada

[17] NYU, Ctr Neural Sci, New York, NY 10003 USA

[18] NYU, Neurosci Inst, Dept Neurosci & Physiol, Grossman Med Ctr, New York, NY USA

[19] McGill Univ, Sch Social Work, Montreal, PQ, Canada

[20] Univ Calif Berkeley, Sch Social Welf, Berkeley, CA 94720 USA

来源：

JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION | 2021年 / 29卷 / 02期

基金：

美国医疗保健研究与质量局;

关键词：

gender and sexual minorities; transgender persons; electronic health records; bioethics; GENDER IDENTITY DISORDER; SEXUAL ORIENTATION; STRUCTURAL COMPETENCE; TRANS; CARE; US; EXPERIENCES; INDIVIDUALS; CHILDREN; SELF;

D O I：

10.1093/jamia/ocab136

中图分类号：

TP [自动化技术、计算机技术];

学科分类号：

0812 ;

摘要：

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.

引用

页码：271 / 284

页数：14

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