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

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.

Keywords: algorithms; classification; data analysis; ethnicity; health equity; machine learning; racial groups; systemic racism.