How accurately are racial minorities represented in US cancer registration systems?

Tracking race-specific rates of cancer incidence and mortality is important for identifying racial differences in these outcomes and for monitoring efforts aimed at achieving the highest level of health for all.

Researchers have assessed how well US race data collection standards and their revisions have captured cancer burdens for various racial groups over the years. The findings are published in Cancer.

Race data collection has followed recommendations from the US Office of Management and Budget, with collection standards aimed at improving the quality of federal race and ethnicity data established in 1977 and revised in 1997 and 2024.

The 1977 standards specified four race categories: white, Black, American Indian or Alaskan Native (AI/AN), and Asian or Pacific Islander (API). The 1997 revision allowed reporting of more than one race and recommended separating API into Native Hawaiian or Other Pacific Islander (NHOPI) and Asian. The 2024 revision added a new Middle Eastern/North African category.

Investigators applied the race definitions in 1977 and 1997 to data on cancer incidences from the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program and to cancer deaths recorded in the National Vital Statistics System.

They found that the rates of cancer incidence for white and Black populations under the 1997 standards were similar to those observed under the previous 1977 standards; however, significantly lower rates were observed for AI/AN populations under the 1997 standards compared with the 1977 standards.

Mortality rates were similar for white, Black, and AI/AN between the two standards. Under the 1997 standards, incidence and mortality rates for most racial groups were comparable whether multiracial individuals were only included with their primary race category, suggesting that the inclusion of multiracial individuals in the primary race category did not substantially affect the overall rates for these populations.

An exception was observed for the NHOPI group, where the rates were lower when multiracial individuals were included.

“The concept of race plays a critical role in cancer prevention, as it interacts with social and environmental factors to influence cancer risk, incidence, treatment, and outcomes,” said corresponding author Mandi Yu, Ph.D., of the National Cancer Institute.

“Enhancing the accuracy of patients’ self-reported racial identification and incorporating multiracial classifications into hospital data collection systems are essential steps for improving the comparability between cancer incidence and census-based population data.”

Tracking race-specific rates of cancer incidence and mortality is important for identifying racial differences in these outcomes and for monitoring efforts aimed at achieving the highest level of health for all.

Researchers have assessed how well US race data collection standards and their revisions have captured cancer burdens for various racial groups over the years. The findings are published in Cancer.

Race data collection has followed recommendations from the US Office of Management and Budget, with collection standards aimed at improving the quality of federal race and ethnicity data established in 1977 and revised in 1997 and 2024.

The 1977 standards specified four race categories: white, Black, American Indian or Alaskan Native (AI/AN), and Asian or Pacific Islander (API). The 1997 revision allowed reporting of more than one race and recommended separating API into Native Hawaiian or Other Pacific Islander (NHOPI) and Asian. The 2024 revision added a new Middle Eastern/North African category.

Investigators applied the race definitions in 1977 and 1997 to data on cancer incidences from the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program and to cancer deaths recorded in the National Vital Statistics System.

They found that the rates of cancer incidence for white and Black populations under the 1997 standards were similar to those observed under the previous 1977 standards; however, significantly lower rates were observed for AI/AN populations under the 1997 standards compared with the 1977 standards.

Mortality rates were similar for white, Black, and AI/AN between the two standards. Under the 1997 standards, incidence and mortality rates for most racial groups were comparable whether multiracial individuals were only included with their primary race category, suggesting that the inclusion of multiracial individuals in the primary race category did not substantially affect the overall rates for these populations.

An exception was observed for the NHOPI group, where the rates were lower when multiracial individuals were included.

“The concept of race plays a critical role in cancer prevention, as it interacts with social and environmental factors to influence cancer risk, incidence, treatment, and outcomes,” said corresponding author Mandi Yu, Ph.D., of the National Cancer Institute.

“Enhancing the accuracy of patients’ self-reported racial identification and incorporating multiracial classifications into hospital data collection systems are essential steps for improving the comparability between cancer incidence and census-based population data.”