Assessing the Accuracy of Racial Minority Representation in US Cancer Registries

Tracking race-specific rates of cancer incidence and mortality is essential for understanding racial disparities in health outcomes and for guiding efforts to improve health equity across all populations in the United States. Researchers have examined how effectively US standards for collecting race data in cancer registration systems have captured the true burden of cancer among different racial groups over time.

Since the recommendations by the US Office of Management and Budget (OMB) in 1977, which established foundational categories for race data collection, there have been revisions aimed at improving the accuracy and inclusivity of racial classifications. The 1977 standards included four categories: white, Black, American Indian or Alaskan Native (AI/AN), and Asian or Pacific Islander (API). The 1997 revision introduced the option to report multiple races and refined API into Native Hawaiian or Other Pacific Islander (NHOPI) and Asian. The latest update in 2024 added a Middle Eastern/North African category.

Studies analyzing data from the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program and the National Vital Statistics System applied these standards to assess racial disparities in cancer incidence and mortality. They found that incidence rates among White and Black populations under the 1997 standards closely resembled those measured under the 1977 standards. However, for AI/AN populations, the incidence rates appeared significantly lower when using the 1997 standards, suggesting improvements or discrepancies in classification.

Mortality rates showed similar patterns across racial groups, with comparable results whether multiracial individuals were categorized solely under their primary race or included across multiple categories. Notably, for the NHOPI group, the inclusion of multiracial individuals resulted in lower observed rates, indicating the importance of accurate race reporting.

Expert commentary highlights that race plays a vital role in cancer prevention, as it interacts with environmental and social factors influencing risk, access to care, treatment outcomes, and survival. Improving self-reporting accuracy and integrating multiracial options into hospital data systems are critical steps towards better understanding and addressing cancer disparities.

This ongoing effort to refine racial classification standards aims to enhance the precision of cancer epidemiology data, ultimately supporting targeted interventions that promote health equity across all racial and ethnic groups in the US.

Source: Medical Xpress