Evaluation of Reliability Between Race and Ethnicity Data Obtained from Self-report Versus Electronic Health Record

Disparities based on perceived race and ethnicity exist in all fields of medicine. Accurate data collection is crucial to addressing these disparities, yet few studies have evaluated the validity of data gathered. This study compares self-reported race and ethnicity data, considered the gold standard, with data documented in the electronic health record (EHR), to assess the validity of that data.

Data from self-reported questionnaires was collected from adolescents admitted to a psychiatric inpatient unit from February 2019 to July 2022. Demographic questionnaires were self-administered as part of a larger battery completed during the admission process. Data was compared to demographic information collected from the hospital's EHR for the same patients and time.

In a sample of 1191 patients (ages 11-18, 61.9% female, 89% response rate), substantial agreement was observed for Hispanic ethnicity (κ = 0.64), while agreement for specific racial groups ranged from slight to substantial (κ = 0.10-0.63). In addition, it was noted that there was discrepancy between multiracial identification, with 17.1% of patients identifying as more than one race in self-reported data compared to 3.1% in EHR data.

The findings from this data set highlight the need for caution when using EHR data to draw conclusions about health disparities. It also suggests that the method of data collection meaningfully influences the responses patients provide. Addressing these challenges is essential for advancing equitable healthcare and mitigating disparities among patients.