Demographic Data Concordance

OBJECTIVES: (1) To measure the concordance of patient demographic data in the electronic health record (EHR); and (2) to determine the level of agreement for patient demographic data between patient report-EHR and patients-caregivers. STUDY DESIGN: We conducted a prospective observational survey of 295 patients (age 12 to 17 years) and caregiver dyads presenting to a pediatric emergency department. The primary outcome was concordance, reporting kappa statistics with 95% CI, of caregiver-reported patient race, ethnicity, and sex and the EHR. Secondary outcomes were concordance between: (1) patient report and EHR and (2) patient and caregiver report, including gender identity and preferred language. We surveyed dyads on the perceived impact of demographic characteristics on emergency care and caregivers on preferences for reporting data. RESULTS: For caregiver and EHR report of race, there was substantial agreement for Asian (κ=0.65, 95% CI: 0.44-0.86), Black/African American/African (κ=0.76, 95% CI: 0.66-0.86), and White (κ=0.66, 95% CI: 0.58-0.75) race and moderate agreement for Hispanic/Latino ethnicity (κ=0.53, 95% CI: 0.44-0.61). Patient report and the EHR had similar concordance for race and poor agreement for Hispanic/Latino ethnicity (κ=-0.17, 95% CI: -0.22 to -0.12). For patients and caregivers, there was strong concordance for race, ethnicity, language, and gender identity. Caregivers were more likely than pediatric patients to report that demographic factors affected emergency care. Most caregivers did not have preferences about demographic data reporting methods. CONCLUSIONS: Concordance of patient race and ethnicity data in the EHR was variable and should be interpreted cautiously.