Improving the Collection and Use of Racial and Ethnic Data in HHS. 3. Data Gaps and Recommendations


This chapter summarizes the data recommendations from the reports of the six health focus area work groups of the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health: (1) infant mortality; (2) cancer screening and management; (3) cardiovascular disease; (4) prevention of diabetes complications; (5) HIV/AIDS; and (6) child and adult immunizations. The data-related recommendations are given in greater detail in Appendix B. Many of the reports made similar recommendations; four of the six reports contained specific recommendations that are the focus of area work groups. As a result, the summary is divided into two sections: (1) cross-cutting recommendations and (2) report-specific recommendations.

The causes and dynamics of health disparities are very complex, and the limited knowledge in this area is imperfect. The six focus area reports all recommended cross-sectional studies. However, there is a special need for longitudinal studies that can assist in unraveling the complex causal relationships.

Several areas in which health disparities are targeted for elimination directly relate to the health of the elderly (e.g., diabetes, cardiovascular disease, and cancer screening). It should be noted, however, that important outcomes that partly represent the "final common pathways" for these diseases (i.e., physical, cognitive, and psychological disabilities) are not as salient in the report as data needs, although they may in fact be assumed under the specific diseases.

For the readers' reference, the new Federal standards for racial and ethnic data specify reporting data for a minimum of five categories of race (American Indian or Alaska Native, Asian, black or African American, Native Hawaiian or Other Pacific Islander, and white) and two categories of ethnicity (Hispanic or Latino and non-Hispanic or Latino). The use of more refined categories is not restricted as long as they can be aggregated into the OMB standard.

Cross-cutting Recommendations

The following recommendations cross cut the six health focus area reports.


1. Data are needed for: (1) morbidity; (2) mortality; (3) life expectancy; (4) normative data (e.g., mean blood pressure); (5) prevalence data on chronic and infectious disease risk factors; and (6) health care indicators for at least the five minimum standard categories for racial and ethnic data. For some minority groups, little or no data exist for many of those five categories. Where data do exist, increasing both the quality and quantity of data collected, and the level of data detail collected are clearly needed.

2. Increase the visibility and availability of the data currently available from the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health website (

3. Examine the possibility of expanding the Centers for Disease Control and Prevention's (CDC) WONDER system, especially the mortality data, to include data for: (1) the OMB minimum standard racial and ethnic categories; (2) American Samoa, Guam, Puerto Rico, U.S. Virgin Islands, and U.S. Pacific territories; and (3) life expectancy.

4. HHS should encourage and sponsor the analysis of all types of existing data by outside researchers including vital statistics, hospitalization, medical care, immunization, cancer screening, risk factor data, and incidence and prevalence data.

5. Evaluate the possibilities of collecting risk factor data for the OMB minimum standard racial and ethnic categories in samples large enough to produce reliable statistical estimates at the State level for those racial/ethnic groups that comprise a significant proportion of the State population and at the national level for groups using the State and Local Area Integrated Telephone Survey (SLAITS) methodology and questions from the Behavioral Risk Factor Surveillance System (BRFSS) or the Youth Risk Behavior Surveillance System (YRBSS).

6. Encourage the development of population-specific examination surveys targeted to small ethnic subgroups or medically underserved populations who cannot be included in the national surveys (National Health Interview Survey [NHIS] and National Health and Nutrition Examination Survey [NHANES]) through oversampling.

7. The Health Care Financing Administration (HCFA) should consider collecting hospitalization data on Hispanics and Hispanic subgroups, and NCHS should consider expanding the National Hospital Discharge Survey to include data for those groups.

8. Encourage representation on the National Committee on Vital and Health Statistics (NCVHS) and the planning groups for NCHS surveys by organizations such as the National Medical Association, National Coalition of Hispanic Health and Human Services (COSSMHO, formerly the Coalition of Spanish-Speaking Mental Health Organizations), National Hispanic Medical Association, Association of Asian/Pacific Community Health organizations, Indian Health Service, and a Historically Black College or University.

9. Evaluate the impact of the new year 2000 standard population and ICD-10 coding (morbidity and mortality) on data for all ethnic groups.


10. Encourage geocoding of all health-related data to determine patterns of health and disease among minority populations (mortality, morbidity, risk factors, health care utilization), as such patterns may be masked when evaluating data at the State level.

Specific Recommendations

The following recommendations were proposed by specific health focus area work groups.

Cancer Screening and Management


11. Explore the feasibility of moving the basic questions on mammograms and pap smear screening from NHIS supplements to the core questionnaire.

12. Although the Statistics, Epidemiology, and End Results program (SEER) has done an excellent job of reporting on racial and ethnic groups, given current resources, the National Cancer Institute (NCI) should explore the feasibility of expanding the SEER Program and/or forming alliances with the State-based cancer registries to produce national cancer incidence rates for the minimum racial and ethnic categories and to allow the system to produce rates for ethnic subgroups.

Cardiovascular Disease

13. The National Heart, Lung, and Blood Institute (NHLBI) has collected incidence data from different sources such as the Atherosclerosis Risk in Communities (ARIC) Study and the Minnesota Heart Survey. Despite good data, the sample sizes are too small to be able to estimate current levels and trends in incidence for any of the minority groups. As a result, NIH, CDC, and HCFA should explore the feasibility of setting up a SEER-like registry for heart disease and stroke.


14. To allow the U.S. to target programs and resources most effectively, we must be able to monitor the epidemic. This means that we need to improve the ability to track early HIV infections before they progress to AIDS. As of December 1997, only 27 States sent data to CDC on all confidentially reported cases of HIV infection. Two additional States reported only cases of HIV infection among children under age 13, and only one State reported cases for children under the age of 6. CDC and the State public health departments should investigate the feasibility of anonymous HIV infection reporting by racial and ethnic groups.

Child and Adult Immunizations

15. CDC should investigate the feasibility of setting up a national immunization surveillance system that includes the capability for the rapid assessment of influenza vaccine effectiveness among vulnerable U.S. populations.

16. Improve time of availability of NHIS- and BRFSS-reported vaccination levels to less than 1 year after data are collected.

17. Data on vaccination levels for Asian or Pacific Islander and American Indian or Alaska Native populations, age 65 and above, are lacking. The Data Work Group encourages a feasibility study on conducting special surveys of vaccination levels or adding vaccination questions on existing surveys of these populations. For example, CDC should assess the

feasibility of using the National Immunization Survey (NIS) sample frame to survey adult immunization levels.

18. Although some States have implemented immunization registries, in the long term, a national system of registries is needed. The Data Work Group encourages a feasibility study on implementing a national system of State-based immunization registries. At a minimum, NHIS and NIS should continue to collect information on vaccine coverage, along with information on race and ethnicity and socioeconomic status.