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

Area of Science:

• Health Informatics
• Medical Sociology
• Public Health

Background:

• Over 1 million transgender individuals reside in the U.S.
• 33% of transgender people report negative healthcare experiences.
• Many negative experiences stem from data representation in electronic health records (EHRs).

Purpose of the Study:

• To present recommendations and identify common pitfalls in sex- and gender-related data collection within EHRs.
• To optimize patient experiences and improve the efficacy and reproducibility of EHR population-based studies.
• To discuss necessary EHR additions, including name and pronoun usage.

Main Methods:

• Review of current practices in EHR data collection for sex and gender.
• Analysis of patient, provider, and researcher needs.
• Development of recommendations for improved data representation.

Main Results:

• Identified common pitfalls in collecting sex- and gender-related data.
• Provided recommendations to enhance EHR data collection.
• Highlighted the complexity of sex- and gender-related data questions.
• Suggested additions for EHRs concerning name and pronoun usage.

Conclusions:

• Collaborations between transgender individuals and healthcare providers are essential.
• Inclusion of transgender and gender-diverse individuals on terminology and standards boards is crucial.
• Shifting the paradigm in transgender and gender-diverse health requires systemic changes in EHR practices.