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

Hale M Thompson

doi:10.1089/trgh.2016.0007

Abstract

Purpose: In 2015, the Centers for Medicare and Medicaid Services ruled that health organizations comply with additional requirements for electronic health records (EHRs), known as “Meaningful Use,” and develop the capacity to collect gender identity data. Research has established effectiveness of a two-step gender identity question to collect these data. This study examines transgender patient perspectives on the use of a two-step question and experiences with privacy and sensitive disclosures in EHRs and healthcare settings.Methods: Four focus groups (N=30) were conducted in Chicago, Illinois in 2014–2015. Participants were asked to compare two intake forms—one with a two-step question and one with a single question—and discuss experiences with gender identity disclosure, privacy, and access to care. Narratives were transcribed verbatim to identify patterns and themes; the extended case method was used and grounded the data analysis process in the concept of intersectionality.Results: Participants expressed appreciation for improved reliability and competencies that the two-part question may afford. Narratives reveal concerns related to patient privacy, safety, and access because of the contexts in which these data are collected and transmitted. Virtually all participants described situations whereby sensitive gender identity information had been involuntarily disclosed, misinterpreted, or abused, and safety and care were compromised.Conclusion: Participants recognized the potential of the two-part question as a measurement and competency tool, but anticipated new privacy violations and involuntary disclosures. Narratives indicate that effects of sensitive disclosures may vary intersectionally, whereby white participants experienced lesser harms than their immigrant, HIV-positive, and black trans feminine counterparts. Discrimination and privacy violations may occur regardless of a two-part or one-part gender identity question, but increasing these sensitive disclosures within expanding EHR infrastructures may require a range of mechanisms that have flexibility across contexts to safeguard sensitive information and access to care.

Highlights

In October 2015, the Centers for Medicare & Medicaid Services and the Office of the National Coordinator for Health IT ruled that electronic health record (EHR) systems certified under Stage 3 of Meaningful Use must have the capacity to record, change, and access structured data on sexual orientation (SO) and gender identity (GI).[1]
One person was excluded because he did not selfidentify as trans or gender nonconforming, but was beginning to explore these identities
Seventy-seven percent reported sex assigned at birth as male, and gender identities expressed during eligibility screening included woman (40%), trans woman (37%), agender or nonbinary gender (10%), man (10%), and trans man (3%)

Summary

Introduction

In October 2015, the Centers for Medicare & Medicaid Services and the Office of the National Coordinator for Health IT ruled that electronic health record (EHR) systems certified under Stage 3 of Meaningful Use must have the capacity to record, change, and access structured data on sexual orientation (SO) and gender identity (GI).[1] Transgender* healthcare research[2] has established the improved reliability of a Section on Population and Behavioral Health, Department of Psychiatry, Rush University Medical Center, Chicago, Illinois. Sex Assigned At Birth: Male Female Intersex. Gender Identity: Male/Man Female/Woman TransMale/Transman TransFemale/Transwoman Genderqueer/GNC Something Else Decline to Answer.

Methods

Results

Conclusion