Missing Race-Based Data in Pediatrics: Why and Where

Abstract

Background: Racism, the differential treatment of people based on their perceived racial or ethnic identity, causes health inequities between racial groups. An absence of race or ethnicity data (RED) in healthcare makes evaluation and awareness of health inequalities caused by systemic racism challenging. Current literature is scarce on collection methods of RED in healthcare globally. 
 Methods: English language references and grey literature published in MEDLINE, Embase, and relevant sources between January 1, 2000, and July 3, 2021, were identified after consultation with a research librarian. Abstracts were evaluated for inclusion and exclusion criteria. Thematic analysis and data extraction were conducted after full-body reviews. Studies included in the final review focused on participants ≤18, were based in a healthcare facility and collected race or ethnicity data. 
 Results: A total of 1,193 references were collected in the initial search (296 MEDLINE, 894 Embase, 3 other). After a full-body evaluation, 28 references were retained and included in the final analysis. Articles were set in the United States (n=7), Canada (n=5), Australia (n=4), and the United Kingdom (n=1). RED was collected using Electronic Medical Records (n=8), Electronic Health Records (n=6), collaborative studies (n=2), Patient Chart Documentation (n=1), and National Emergency Services Information System (NEMSIS) data (n=1). RED was collected in Tertiary care centers (n=8), Secondary care centers (n=1), a Primary care center (n=1), and a Quaternary care center (n=1). Racial and ethnic categories discussed in the literature included: White, Hispanic, Black, Indigenous, Aboriginal, and Asian. Six articles explicitly reported a need for more RED collection. 
 Conclusion: Collecting RED is critical to understanding health inequities and the impacts of racism in healthcare. Globally, there is limited information on RED collection. We strongly endorse the recommendation of the BC Office of Human Rights Commissioner on the collection of RED in all age groups, including pediatrics. Capturing RED respectfully, meaningfully, and accurately across all groups will help identify potential associations, barriers, and inequities in health outcomes, helping to mitigate and eliminate systemic racism in healthcare.