to collecting such data, including problems with small numbers for particular subgroups, tensions between sufficient detail and meaningful aggregation, reconciling trade-offs with data collection of other important individual characteristics, and other resource constraints.

Through interviews with health agency staff and review of published sources, we examined how selected states approach the collection of racial and ethnic data. The background section describes the most common data sources used by states that collect racial and ethnic data. The methods section describes our data collection procedure for interviews and data analysis. The results section describes some of the variation among states in the collection of data on race, ethnicity, and other socioeconomic characteristics, and the benefits and costs of such data collection from the perspective of state administrators. The conclusions section provides some considerations for further research.


Data Sources

States collect racial, ethnic, and other socioeconomic data through multiple data sources as part of their administration of state and federal health programs. Some of the most common data sources and their characteristics are described below and summarized in Table E-1.

TABLE E-1 Summary of Characteristics of State Racial and Ethnic Data Sources

Data Source

Source of Racial Ethnic Data

Self-Reported or Third-Party

Coding Standard

Hospital discharge


Self-report/Perceptual assessment


Vital statistics—death

Funeral director

Family inquiry


Vital statistics—birth




Cancer registries


Self-report/Perceptual assessment



County workers

Self-report/Perceptual assessment


Health interview surveys

Telephone survey



NOTE: UB-92 = Uniform Bill for Hospitals; OMB=Office of Management and Budget;

NCHS = National Center for Health Statistics; SEER = Surveillance, Epidemiology, and End Results; NPCR = National Program of Cancer Registries.

The National Academies of Sciences, Engineering, and Medicine
500 Fifth St. N.W. | Washington, D.C. 20001

Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement