Abstract Details

Title Differences in Self-reported Race/Ethnicity in Parkinson’s Disease Research Participants and Electronic Medical Record (EMR)-based Race/Ethnicity in Hawaii

Topic Practice, Policy, and Ethics

Presentation(s) P5 - Poster Session 5 (8:00 AM-9:00 AM)

Poster/Presentation
Number 1-001

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.

Authors/Disclosures
Emma Krening, Other PRESENTER	Ms. Krening has nothing to disclose.
Molly Mouchawar, BA	Miss Mouchawar has nothing to disclose.
Michiko K. Bruno, MD, FAAN (Queens Medical Center)	The institution of Dr. Bruno has received research support from Michael J. Fox Foundation . The institution of Dr. Bruno has received research support from PIKO. The institution of Dr. Bruno has received research support from CurePSP. The institution of Dr. Bruno has received research support from Parkinson's Foundation .

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