Race and Ethnicity Reporting and Hospital Cancer Registries

Background and Objectives: The US Office of Management and Budget (OMB) issued guidelines for the reporting of race (White, Black or African American, American Indian or Alaskan Native, Asian, and Native Hawaiian or other/Pacific Islander) and ethnic (Hispanic/non-Hispanic) origin. Inaccurate collection of race or ethnicity may impair the monitoring of health disparities. This study explores whether Rhode Island hospital cancer registries (CRs) adhere to the OMB directive.

Methods: 14 Rhode Island acute care hospitals (representing the 13 hospital CRs) participated in the 2007 survey. Main topics included methods for collecting race and ethnicity, access to CR data, feasibility of medical record and CR linkages, and reporting. Key informant interviews were conducted to gain a better insight into survey results and inform discussion of findings and recommendations.

Results: 10 hospital CRs (77%) responded to the survey. Collection of race and ethnicity is not uniform. For race, methods include self-reporting per guideline (40%), questions (20%) or guesses (10%) from intake staff, and medical records (30%). 20% of CRs obtain ethnicity information thru patient self-reporting and 40% from other methods. For 40% of the CRs, the ascertainment method for ethnicity was undetermined.

Conclusions: Only 27% of RI CRs comply with the OMB directive for patients with a primary diagnosis of cancer. Findings suggest the need to 1) partner with hospitals to improve adherence; and, until statewide compliance is achieved, 2) apply other methods (e.g.; Latino Surname Algorithm) to adjust cancer incidence rates resulting from Hispanic ethnicity underreporting.