Discordant Race and Ethnicity Documentation in the Georgetown Multiple Sclerosis and Neuroimmunology Center
Luis Manrique1, Leanne Peres da Silva2, Benjamin Osborne3, Carlo Tornatore3, Robert Shin1
1MedStar Georgetown University Hospital, 2Georgetown University Hospital, 3Medstar Georgetown University Hospital
Objective:
We aimed to evaluate the reliability of R/E documentation in the EHR of MedStar Georgetown University Hospital.
Background:
The incidence and prevalence of multiple sclerosis (MS) appears to vary by race and ethnicity (R/E), and prognosis has been reported to be worse in Black and Hispanic/Latinx MS patients compared to White MS patients. Frequently, studies rely on electronic health records (EHR), but discrepancies in R/E documentation may be a potential source of errors in health disparities assessment.
Design/Methods:
Self-reported data from the MS-ADVANCE study at Georgetown University was compared to demographics extracted from the MedStar Georgetown University Hospital EHR. Concordance was defined as the percent agreement between self-reported R/E and R/E demographic information found in the EHR.
Results:
R/E data from 197 participants in the MS-ADVANCE study were analyzed. Most participants self-reported as Non-Hispanic White (n=142), which generally matched EHR documentation (concordance 92.6%). Similarly, 86% of Non-Hispanic Black (n=43) and 100% of Asian individuals (n=2) were accurately identified in the EHR. However, only 2 of 8 self-identified Hispanic/Latinx patients were identified as such in the EHR (concordance 25%).
Conclusions:
This is the first study evaluating concordance of self-reported R/E information compared to EHR documentation in patients with MS. While concordance was generally good in most groups, R/E information in the EHR was often incorrect for Hispanic/Latinx patients. Because most epidemiological analyses extract data from electronic records, this considerable observed discrepancy in R/E documentation may impact our understanding of prevalence, incidence, and prognosis in Hispanic/Latinx individuals with MS. Since obtaining reliable demographic information is crucial to determine quality of care and health outcomes, improvement in data collection is necessary when exploring healthcare disparities in Hispanic/Latinx individuals living with MS.