Methods for retrospectively improving race/ethnicity data quality: a scoping review

Author:

Chin Matthew K1,Đoàn Lan N1,Russo Rienna G1,Roberts Timothy2,Persaud Sonia13,Huang Emily1,Fu Lauren14,Kui Kiran Y15,Kwon Simona C1,Yi Stella S1

Affiliation:

1. NYU Grossman School of Medicine Section for Health Equity, Department of Population Health, , New York, NY 10016, United States

2. NYU Grossman School of Medicine New York NYU Langone Health Sciences Library, , NY 10016, United States

3. Department of Health Policy and Management, CUNY School of Public Health & Health Policy , New York, NY 10027, United States

4. Georgetown University , Washington DC 20007, United States

5. Department of Epidemiology, Columbia Mailman School of Public Health , New York, NY 10032, United States

Abstract

Abstract Improving race and ethnicity (hereafter, race/ethnicity) data quality is imperative to ensure underserved populations are represented in data sets used to identify health disparities and inform health care policy. We performed a scoping review of methods that retrospectively improve race/ethnicity classification in secondary data sets. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, searches were conducted in the MEDLINE, Embase, and Web of Science Core Collection databases in July 2022. A total of 2 441 abstracts were dually screened, 453 full-text articles were reviewed, and 120 articles were included. Study characteristics were extracted and described in a narrative analysis. Six main method types for improving race/ethnicity data were identified: expert review (n = 9; 8%), name lists (n = 27, 23%), name algorithms (n = 55, 46%), machine learning (n = 14, 12%), data linkage (n = 9, 8%), and other (n = 6, 5%). The main racial/ethnic groups targeted for classification were Asian (n = 56, 47%) and White (n = 51, 43%). Some form of validation evaluation was included in 86 articles (72%). We discuss the strengths and limitations of different method types and potential harms of identified methods. Innovative methods are needed to better identify racial/ethnic subgroups and further validation studies. Accurately collecting and reporting disaggregated data by race/ethnicity are critical to address the systematic missingness of relevant demographic data that can erroneously guide policymaking and hinder the effectiveness of health care practices and intervention.

Funder

Centers for Disease Control and Prevention (CDC) and New York State

NIH National Heart, Lung and Blood Institute

National Institutes of Health (NIH) National Institute on Minority Health and Health Disparities

Publisher

Oxford University Press (OUP)

Subject

General Medicine,Epidemiology

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