Differences in Self-reported Race/Ethnicity in Parkinson’s Disease Research Participants and Electronic Medical Record (EMR)-based Race/Ethnicity in Hawaii
Emma Krening1, Molly Mouchawar2, Michiko Bruno1
1Queens Medical Center, 2Pacific University
Objective:
To compare self-reported race/ethnicity of patients enrolled in a Parkinson’s disease (PD) research study with race/ethnicity data from Electronic Medical Records (EMR) in Hawaii.
Background:
Accurate race/ethnicity data in EMRs is crucial for research aiming to identify and address health disparities. Studies have shown that there are discrepancies between self-reported and EMR-based race/ethnicity data,1–3 particularly among multiracial individuals.3 Among Native Hawaiians (NH), approximately one-third identify solely as NH, 36% identify as two races, and 26% as three or more.4
Design/Methods:
PD patients were enrolled in an IRB-approved genetic research study at The Queen’s Medical Center. During a standardized interview, participants provided self-reported race, and multiple racial identities were recorded when applicable. We compared self-reported race/ethnicity with data from the EMR (EPIC system). EMR-based race/ethnicity was deemed inaccurate if: 1) incorrect race was listed, 2) second racial/ethnic group was missing, or 3) second race was captured but not in “race” field. Subgroup differences were analyzed using a 3x2 ANOVA with R version 4.4.1.
Results:
Data from 217 subjects were analyzed: 186 subjects identified as single race and 31 as multiracial. Majority (70%) of individuals who identified as Native Hawaiian/Pacific Islander (NHPI) also identified with another race. Overall, EMR-based race/ethnicity matched patients' self-identified race/ethnicity 79% of the time. Accuracy was 93% for individuals identifying with a single race, but dropped to 3% for those identifying as multiracial, with statistically significant differences (p = 0.017). The most common cause of inaccuracy was missing information, but incorrect race entries were found in both single-race and multiracial subjects.
Conclusions:
EMRs often fail to accurately capture race, particularly for multiracial individuals, a group that is common among NHPI populations. This inaccuracy must be considered in population-based research utilizing EMR data. Standardization and improvements in EMR documentation are needed to better reflect the racial and ethnic identities of multiracial patients.
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