Executive Summary

The Department of Health and Human Services (HHS) has long recognized the serious gaps in its information systems and databases regarding racial and ethnic data, and has established various work groups over the years to document problems and develop solutions. As a result, numerous HHS reports have identified problems with racial and ethnic data and have proposed recommendations. While a number of improvements have been made in racial and ethnic data, serious gaps remain.

This report strives to build upon the numerous recommendations developed in the past and present a long-term strategy for improving the collection and use of racial and ethnic data across the Department and its agencies and, more specifically, in relation to the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health. Implementing the recommendations of this report will require a major commitment of time and resources by the Department and its agencies if it is to become a framework for significant change.

This report is the result of a joint venture between two groups formed to address racial and ethnic data needs--the Working Group on Racial and Ethnic Data of the HHS Data Council and the Data Work Group of the HHS Initiative to Eliminate Racial and Ethnic Health Disparities in Health. As a consequence, much of the report focuses on health data. However, where appropriate and feasible, the recommendations contained here apply equally to human services data.

The eliminating disparities initiative is part of the President's Initiative on Race and is in response to the President's national commitment to the goal of eliminating, by the year 2010, racial and ethnic disparities in six areas: (1) infant mortality, (2) cancer screening and management, (3) cardiovascular disease, (4) prevention of diabetes complications,

(5) HIV/AIDS, and (6) child and adult immunization. HHS work groups were formed to report on the health problems in each of these six focus areas. The work groups had difficulties in finding relevant, complete, and accurate data to measure the racial and ethnic disparities in these six focus areas. As a result, they documented the data problems and made recommendations for improving data quality and collection. The recommendations are incorporated into this report.

The Administration also has announced a multiple year initiative to measure and report on racial and ethnic discrimination in key sectors of society including health care. Measures of racial and ethnic discrimination also are data dependent because they focus on one of many potential causes of disparity. As the Department assesses how to measure racial and ethnic discrimination effectively, gaps in racial and ethnic data will surface that are similar to those in the eliminating disparities initiative. To address the initiative, the Department is currently supporting a comprehensive review of the state of the art in measuring racial discrimination in health care. The results of this review will be available later this year and may identify additional needs for racial data. This report addresses measures of discrimination in a cursory manner; a separate report will be produced in the future.

The recommendations developed by past groups that examined data needs were re-evaluated for this report in light of current and anticipated program and data developments and resource levels. New recommendations were developed to address new problem areas. The result is a consolidated plan for improving the collection and use of racial and ethnic data in general and, where appropriate, specific examples are included relevant to the six focus areas of the eliminating disparities initiative. The recommendations are primarily operational in nature rather than policy-oriented. Policy issues related to racial and ethnic data are addressed in the HHS inclusion policy, Policy Statement on Inclusion of Race and Ethnicity in DHHS Data Collection Activities, which appears in Appendix G.

The heart of the report is chapter 7, recommendations for the HHS plan for improving the collection and use of racial and ethnic data. Key sources driving the recommendations are the eliminating disparities initiative, Healthy People 2010, and reports and correspondence from advocacy groups. Other recommendations fill some fundamental gaps in racial and ethnic data, which represent minimum data for demographic and health analyses. Data gaps also are associated with other population groups based on age, gender, sexual orientation, and disabilities. Although these special populations are not part of its charge, the Working Group on Racial and Ethnic Data recommends that the Department also determine how to address their data needs.

The eliminating disparities and measures of discrimination initiatives are very important, but even without them, this report would still be necessary because of the fundamental problems associated with racial and ethnic data. Long after the eliminating disparities and measures of discrimination initiatives are completed, this report will still have relevance and import to the data activities of the Department and its agencies.

All the recommendations in this report are important to the Department's long-term strategy for improving racial and ethnic data. The intent of the recommendations is not just to have more data but better data on racial and ethnic groups. Ten major, overarching recommendations, however, should be given high priority.

1. Strategic Plan. HHS should develop a 10-20 year strategic plan for the national surveys (such as the National Health Interview Survey) that includes a schedule for periodic targeting of racial and ethnic groups. This will be a major undertaking that will require the Department and the agencies to work together to develop a comprehensive and feasible plan.

The funding sources for these targeted surveys needs to be determined. One option is to include the funding as a special HHS budget item because these activities represent priorities of the Administration and the Secretary and are crosscutting in importance. Alternatively, the funding could be part of the applicable agency's budget on a recurring basis and help provide direct control for the agency.

2. HIPAA Standards. HHS should ensure that the standards being developed in response to the Health Insurance Portability and Accountability Act (HIPAA) include racial and ethnic identifiers as reflected by the Office of Management and Budget (OMB) standard classifications. The Department should demonstrate its commitment to improving racial and ethnic data by incorporating these data into the health care transaction standards developed under HIPAA. This will require that HHS and its agencies make the case before the standard setting groups during the next year or two.

3. Healthy People 2010. Agencies should address the racial and ethnic data gaps for non-developmental objectives for Healthy People 2010. This will be a considerable effort and cannot be detailed in this report. The initial focus of these efforts should be on racial and ethnic data gaps for objectives relating to the six health focus areas of the eliminating disparities initiative.

4. Registries. Agencies should expand or establish new registries for certain chronic conditions targeted in the eliminating disparities initiative including cancer, diabetes, heart disease, and stroke. The quality of racial and ethnic data should be improved in existing registries.

5. State-based Data Collection. The feasibility of collecting sufficiently large sample sizes in each State for each racial and ethnic group that comprises a significant proportion of the population of the State needs to be explored. For example, HHS should evaluate the possibility of collecting risk factor, health insurance, and treatment data through existing data collection mechanisms, including State surveys and administrative data. The proper roles for the Federal government and the States in such efforts need to be determined.

6. Support for Data Analysis and Research. Agencies should support extramural and intramural analyses of existing data for and related to racial and ethnic groups. To encourage minority researchers in public health, demography, statistics, and epidemiology, training programs for minority students and faculty should be funded, whenever possible. The programs should include the formations of partnerships between minority institutions, researchers and/or students, and institutions that are expert in these subject areas.

7. Accessibility to Data. Agencies should develop aggressive public use data release programs to promote wider analysis of minority health data and data relating to human services; provide grant and contract support for data analysis and training in data analysis; and support periodic data user conferences. Agencies should increase the accessibility of data files by making them available on websites.

8. National Reports. HHS should publish periodic national reports on the health of racial and ethnic groups, and services received, compared to all races and white populations. Reports that focus on specific groups also are needed.

9. Training. HHS should develop an initiative to train health personnel in areas such as completing records, statistics, survey research, and epidemiology to improve the comprehensiveness and reliability of racial and ethnic data. In addition, HHS should strengthen and expand cooperative efforts to train personnel such as registrars, funeral directors, caseworkers, and hospital personnel to complete vital statistics and administrative records accurately, particularly regarding racial and ethnic identifying items. Physician training in the medical certification of death is also needed. To complement the training, guidelines should be developed and broadly disseminated.

10. Dissemination to Racial and Ethnic Communities. Agencies should disseminate relevant racial and ethnic findings back to the communities where the data were collected. At the beginning of a study, an agency should inform the community about the data and information that can be shared with the community and then ensure that these provisions are carried out.

The following major recommendations are more specific in nature. They are a subset of the recommendations included in chapter 7 and are grouped into four categories: (1) data collection, (2) data analysis and interpretation, (3) data dissemination and use, and (4) data research and maintenance.

Data Collection

• Geocoding. Agencies should support feasibility studies to collect geographically identifiable information and allow geocoding for national data systems. Geocoding allows linkage of files, which can help to fill gaps in socioeconomic status data and/or racial and ethnic data in HHS data collection systems so as to better target resources.
• Measures of Discrimination. Agencies funding health services research and/or paying for health services delivery should determine what measures of discrimination in health care settings are currently being collected. They should expand existing data collection systems or create new ones to incorporate measures of discrimination in health care settings and to measure/monitor discrimination, as appropriate. These efforts will require research and evaluation activities to determine how best to accomplish the goals.
• Impact of Program Interventions. Agencies should study the impact of program interventions on minority populations by tracking the exposure to the intervention and measuring intermediate outcomes related to the program. Agencies need to determine the strategies that work best in addressing disparities and discrimination.
• Inclusion Policy. HHS should advocate for and require, wherever possible, the inclusion of racial and ethnic data in administrative records (e.g., ensure that a racial and ethnic data element be included in the standard for the enrollment/encounter transaction in HIPAA). Furthermore, HHS should use existing authorities to require the routine collection of racial and ethnic data for healthcare settings. The inclusion policy applies to all HHS programs, not just those which address health.
• National Conferences. HHS should conduct national conferences to enhance coordination and improve data collection, analysis, and dissemination. A conference should be devoted to determining ways the Federal government and States can collaborate to eliminate racial and ethnic data gaps related to Healthy People 2010 and the eliminating disparities initiative. The conference should also promote partnerships with States on achieving consistency in reporting race and ethnic origin.
• Sociocultural Data. Sociocultural data such as socioeconomic status (i.e., individual, family/household, community), behavioral risk factors, occupation, language proficiency, and birthplace need to be collected and analyzed to understand the underlying causes of disparities.
• Culturally Appropriate Surveys. Culturally and linguistically appropriate interviewing techniques need to be employed at all times when conducting surveys on racial and ethnic health issues. For targeted studies, the local communities or representatives of the groups being studied should be consulted to learn the relevant cultural factors and language requirements, as feasible.
• Electronic Patient Records. HHS should develop a strategy for ensuring that standards for future patient record systems meet public health as well as clinical data needs for all patients, particularly for minority patients. The accelerating pace with which electronic patient record systems are being developed and deployed presents an historic opportunity for HHS.
• Puerto Rico, U.S. Virgin Islands, and the U.S. Pacific Territories. HHS should expand its health database on Puerto Rico, U.S. Virgin Islands, and the U.S. Pacific territories--American Samoa, Commonwealth of the Northern Marianas, and Guam.

Data Analysis and Interpretation

• Culturally Sensitive Analyses. Analyses should be culturally appropriate and sensitive. To enhance the utility of the data, analysis teams should consist of not only the proper mix of disciplines but also persons who are familiar with and sensitive to the cultural factors and issues. Participation of the community being studied throughout all phases of the project (from design through publication of the results) should be encouraged and promoted.
• Reporting, Referral, and Treatment Bias. Analysts should be aware of and take into account possible sources of bias in racial and ethnic data. In particular, treatment and services data sources may differ based on patterns of service delivery, referral to specialty and other care, and reporting of data by racial and ethnic groups.
• Sociocultural Analyses. Analysts should be encouraged to use additional information collected in their data set on sociocultural items, such as socioeconomic status, behavioral risk factors, occupation, language proficiency, and birthplace, to assist in attempting to understand the factors underlying racial and ethnic disparities in health and health care access.
• Death Rates. Agencies, when calculating infant mortality rates for racial and ethnic groups, should use the linked birth-infant death file and the results from race misreporting studies to adjust for the misreporting of race on death certificates.
• New Age Adjustment Standard. The Centers for Disease Control and Prevention (CDC)/National Center for Health Statistics (NCHS) should study the effects of the new year 2000 standard population on death rates among all racial and ethnic groups. Agencies should use age-specific rates to supplement age-adjusted rates, where appropriate, to overcome some of the differences caused by the switch from the 1940 standard population.
• New OMB Standards for Maintaining, Collecting, and Presenting Federal Data on Racial and ethnic. Agencies should bridge racial and ethnic data collected under the new OMB standards to that collected under the old standards in accordance with the OMB tabulation guidelines.
• ICD-10. Agencies should evaluate the impact of ICD-10 coding for mortality and morbidity by racial/ethnic group.

Data Dissemination and Use

• Data Retrieval Systems. HHS data retrieval systems (e.g., CDC WONDER and Health Resources and Services Administration (HRSA) Area Resource File) should be expanded to include data for the OMB standard racial and ethnic groups at the appropriate level of geography. Commensurate population data should be developed by the Census Bureau to calculate death rates for detailed racial and ethnic groups.
• Data Centers. HHS should support regional racial and ethnic data centers to make these data more accessible to provide technical assistance in their use.
• Website for HHS Initiative to Eliminate Racial and Ethnic Disparities in Health. The visibility and availability of data from the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health website (http://raceandhealth.hhs.gov/ ) should be expanded by increasing the number of agency websites that can hotlink to the eliminating disparities website.

Data Research and Maintenance

• Research on Reporting of Race and Ethnicity. HHS should assume a leadership role with other Departments and the Bureau of the Census to undertake a program of methodological research into issues associated with the measurement of race and ethnicity in surveys, censuses, and research. It is critical in calculating rates that the accuracy of denominator data be improved for racial and ethnic groups.
• Administrative Records. Agencies should conduct methodologic research to improve reporting of race and ethnicity for administrative and medical records (e.g., Healthcare Cost and Utilization Project (HCUP), National Hospital Discharge Survey (NHDS), Medicare, and Medicaid). An issue to be addressed is the most appropriate method of collecting racial and ethnic data. On administrative records: should the data be self-reported as opposed to recorded by an observer?
• Telephone Survey Methods. Agencies should study the feasibility of using telephone interviews to augment and improve estimates from their interview-based surveys for racial and ethnic groups and other special populations. Data from in-person household interviews and administrative records should be collected for comparison and adjustment purposes, especially in Indian country where telephone coverage can be low. Studies are needed to determine how well households with phones represent households without phones and how associated problems can be overcome (e.g., through use of cell phones).
• Questionnaire Design. HHS should focus on better sampling techniques and better questionnaire design relating to racial and ethnic data collection. To provide more standardization across studies, the NCHS Questionnaire Design Research Laboratory should perform cognitive testing of batteries of items used in surveys. Training on designing questionnaires for collecting racial and ethnic data is needed because of possible confusion about the meaning of OMB standard categories.
• Death Certificate Accuracy. Studies should be undertaken to determine the degree and scope of racial and ethnic misreporting on death certificates. The Indian Health Service should conduct follow-on studies to its original National Death Index study to determine how the situation has changed. Similar studies need to be conducted for other racial and ethnic groups.
• Record Linkage. HHS should develop mechanisms for matching individual records from among government data sets, within and among Departments, for health, civil rights, and statistical research purposes. A workshop should be held to address the issues related to matching, e.g., maintaining privacy and confidentiality for respondents. HHS should encourage and support legislative changes to allow such matching to occur with the appropriate privacy and confidentiality safeguards.
• Post-censal Population Estimates. CDC/NCHS should pursue collaborative methodologic work with the Bureau of the Census for post-censal estimates by race and ethnicity of (1) the population by age and gender (State-level and below) and (2) social and economic characteristics (national, State-level, and below). Ten years is too long to wait for these data because they are critical not only for assessing the health and well being of minorities but also for designing population survey samples.
• Improved Measures of Income and Wealth. CDC/NCHS should develop improved measures of income, especially wealth, in NCHS surveys such as the National Health Interview Survey (NHIS) and the National Health and Nutrition Examination Survey (NHANES). These important measures of economic status are associated with health status.

A detailed implementation plan will be developed as a follow-on document to this report. The Working Group on Racial and Ethnic Data will work with the HHS Data Council to craft an implementation plan--action items, priorities, responsible office(s), resource estimates)--and establish an oversight/coordinating entity. The Department should fully support the implementation of the recommendations contained in this report and seek appropriate funding. As new and better racial and ethnic data are collected, attention will need to be devoted to ensuring that the data are properly analyzed and disseminated to national and State officials, who have the power to support and fund policies and programs to improve the health of these groups. Expanding the data collection process alone will not eliminate disparities. Systematic changes in the way that data are used are necessary to guide policy and resource allocation.

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