Concordance of Data About Sex From Electronic Health Records and the National Death Index: Implications for Transgender Populations.

Abstract

Transgender individuals have greater health risks than cisgender individuals, which may bode for greater mortality. However, research is limited by lack of gender identity information at the time of death. Novel opportunities to combine administrative data with National Death Index (NDI) data may facilitate mortality research about transgender populations, but binary measures of sex and gender may pose problems for analyses. This study explored differences in sex recorded in Veterans Health Administration (VHA) electronic health record (EHR) and NDI data between transgender and cisgender decedents. We used VHA EHR data from fiscal years 2000-2016 to identify deaths among a sample of transgender and cisgender patients. We cross-tabulated sex recorded in the NDI with EHR-based sex from VHA EHR data. We extracted data in 2018 and conducted analyses in 2020. Death occurred for 1109 transgender patients and 7757 cisgender patients. For cisgender decedents, EHR-based sex and NDI-based sex were 100% concordant. For transgender decedents, 46 (4%) were discordant between data sources. Of transgender decedents with female EHR-based sex (n = 259), 17% were indicated as male in NDI data; of those with male EHR-based sex (n = 850), 0.2% were indicated as female in NDI data. Data linkage between EHR and the NDI can facilitate transgender mortality research, but examining mortality specific to various transgender identities remains difficult. Improved documentation of sex and gender is needed within US mortality surveillance.