Collection of Data on Race, Ethnicity, Language, and Nativity by US Public Health Surveillance and Monitoring Systems: Gaps and Opportunities

Abstract

Objective: Despite increasing diversity in the US population, substantial gaps in collecting data on race, ethnicity, primary language, and nativity indicators persist in public health surveillance and monitoring systems. In addition, few systems provide questionnaires in foreign languages for inclusion of non-English speakers. We assessed (1) the extent of data collected on race, ethnicity, primary language, and nativity indicators (ie, place of birth, immigration status, and years in the United States) and (2) the use of data-collection instruments in non-English languages among Centers for Disease Control and Prevention (CDC)-supported public health surveillance and monitoring systems in the United States.

Methods: We identified CDC-supported surveillance and health monitoring systems in place from 2010 through 2013 by searching CDC websites and other federal websites. For each system, we assessed its website, documentation, and publications for evidence of the variables of interest and use of data-collection instruments in non-English languages. We requested missing information from CDC program officials, as needed.

Results: Of 125 data systems, 100 (80%) collected data on race and ethnicity, 2 more collected data on ethnicity but not race, 26 (21%) collected data on racial/ethnic subcategories, 40 (32%) collected data on place of birth, 21 (17%) collected data on years in the United States, 14 (11%) collected data on immigration status, 13 (10%) collected data on primary language, and 29 (23%) used non-English data-collection instruments. Population-based surveys and disease registries more often collected data on detailed variables than did case-based, administrative, and multiple-source systems.

Conclusions: More complete and accurate data on race, ethnicity, primary language, and nativity can improve the quality, representativeness, and usefulness of public health surveillance and monitoring systems to plan and evaluate targeted public health interventions to eliminate health disparities.

Keywords: ethnic groups; health disparities measurement; immigrant; language barriers; nativity; population surveillance.

Figure.

Examples of questions used in surveys conducted by the US Census Bureau to collect data on race, ethnicity, primary language, and nativity indicators of the US population. Abbreviation: OMB, Office of Management and Budget.