Literature DB >> 34486655

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

Clair A Kronk1, Avery R Everhart2,3, Florence Ashley3,4, Hale M Thompson5, Theodore E Schall6, Teddy G Goetz7, Laurel Hiatt8, Zackary Derrick9, Roz Queen10, A Ram11, E Mae Guthman3,12, Olivia M Danforth13, Elle Lett3,14, Emery Potter15, Simón E D Sun3,16,17, Zack Marshall18, Ryan Karnoski3,19.   

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.
© The Author(s) 2021. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Entities:  

Keywords:  bioethics; electronic health records; gender and sexual minorities; transgender persons

Mesh:

Year:  2022        PMID: 34486655      PMCID: PMC8757312          DOI: 10.1093/jamia/ocab136

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   7.942


  116 in total

Review 1.  Barriers to quality health care for the transgender population.

Authors:  Tiffany K Roberts; Corinne R Fantz
Journal:  Clin Biochem       Date:  2014-02-19       Impact factor: 3.281

2.  Clinical nutrition education in medical schools: Results of an ESPEN survey.

Authors:  Cristina Cuerda; Stéphane M Schneider; André Van Gossum
Journal:  Clin Nutr       Date:  2017-05-06       Impact factor: 7.324

3.  A Comprehensive Survey of Preclinical Microbiology Curricula Among US Medical Schools.

Authors:  Dora J Melber; Arianne Teherani; Brian S Schwartz
Journal:  Clin Infect Dis       Date:  2016-04-28       Impact factor: 9.079

4.  Fifteen-minute consultation in the normal child: Challenges relating to sexuality and gender identity in children and young people.

Authors:  Thomas O'Neill; Justin Wakefield
Journal:  Arch Dis Child Educ Pract Ed       Date:  2017-05-11       Impact factor: 1.309

5.  Temporal Trends in Gender-Affirming Surgery Among Transgender Patients in the United States.

Authors:  Joseph K Canner; Omar Harfouch; Lisa M Kodadek; Danielle Pelaez; Devin Coon; Anaeze C Offodile; Adil H Haider; Brandyn D Lau
Journal:  JAMA Surg       Date:  2018-07-01       Impact factor: 14.766

6.  Defining health information technology-related errors: new developments since to err is human.

Authors:  Dean F Sittig; Hardeep Singh
Journal:  Arch Intern Med       Date:  2011-07-25

7.  Trends in the use of puberty blockers among transgender children in the United States.

Authors:  Carla Marisa Lopez; Daniel Solomon; Susan D Boulware; Emily R Christison-Lagay
Journal:  J Pediatr Endocrinol Metab       Date:  2018-06-27       Impact factor: 1.634

8.  Transgender-inclusive measures of sex/gender for population surveys: Mixed-methods evaluation and recommendations.

Authors:  Greta R Bauer; Jessica Braimoh; Ayden I Scheim; Christoffer Dharma
Journal:  PLoS One       Date:  2017-05-25       Impact factor: 3.240

9.  Patient Perspectives on Gender Identity Data Collection in Electronic Health Records: An Analysis of Disclosure, Privacy, and Access to Care.

Authors:  Hale M Thompson
Journal:  Transgend Health       Date:  2016-10-01

10.  Teaching health professionals how to tailor gender-affirming medicine protocols: A design thinking project.

Authors:  Kinnon R MacKinnon; Lori E Ross; David Rojas Gualdron; Stella L Ng
Journal:  Perspect Med Educ       Date:  2020-10
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  7 in total

1.  Informatics for sex- and gender-related health: understanding the problems, developing new methods, and designing new solutions.

Authors:  Mary Regina Boland; Noémie Elhadad; Wanda Pratt
Journal:  J Am Med Inform Assoc       Date:  2022-01-12       Impact factor: 7.942

2.  Differences in All-Cause Mortality Among Transgender and Non-Transgender People Enrolled in Private Insurance.

Authors:  Landon D Hughes; Wesley M King; Kristi E Gamarel; Arline T Geronimus; Orestis A Panagiotou; Jaclyn M W Hughto
Journal:  Demography       Date:  2022-06-01

3.  Pediatric sexual orientation and gender identity data collection in the electronic health record.

Authors:  Hilary Goldhammer; Chris Grasso; Sabra L Katz-Wise; Katharine Thomson; Allegra R Gordon; Alex S Keuroghlian
Journal:  J Am Med Inform Assoc       Date:  2022-06-14       Impact factor: 7.942

Review 4.  Transgender Individuals and Digital Health.

Authors:  Asa E Radix; Keosha Bond; Pedro B Carneiro; Arjee Restar
Journal:  Curr HIV/AIDS Rep       Date:  2022-09-22       Impact factor: 5.495

5.  The Inclusion of Sex and Gender Beyond the Binary in Toxicology.

Authors:  Dillon E King
Journal:  Front Toxicol       Date:  2022-07-22

Review 6.  Sex trouble: Sex/gender slippage, sex confusion, and sex obsession in machine learning using electronic health records.

Authors:  Kendra Albert; Maggie Delano
Journal:  Patterns (N Y)       Date:  2022-08-12

7.  Sleep disturbance and suicide risk among sexual and gender minority people.

Authors:  Emily A Dolsen; Amy L Byers; Annesa Flentje; Joseph L Goulet; Guneet K Jasuja; Kristine E Lynch; Shira Maguen; Thomas C Neylan
Journal:  Neurobiol Stress       Date:  2022-09-15
  7 in total

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