Transgender data collection in the electronic health record: Current concepts and issues.
Charles KronkAvery R EverhartFlorence AshleyHale M ThompsonTheodore E SchallTeddy G GoetzLaurel HiattZackary DerrickRoz QueenA RamE Mae GuthmanOlivia M DanforthElle LettEmery PotterSimón E D SunZack MarshallRyan KarnoskiPublished in: Journal of the American Medical Informatics Association : JAMIA (2021)
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.
Keyphrases
- electronic health record
- healthcare
- mental health
- hiv testing
- clinical decision support
- adverse drug
- men who have sex with men
- end stage renal disease
- newly diagnosed
- public health
- chronic kidney disease
- ejection fraction
- primary care
- clinical practice
- peritoneal dialysis
- case report
- climate change
- big data
- social media
- hiv infected
- patient reported
- artificial intelligence
- health promotion