1.
Introduction
Purpose
This report provides the Department of Health and Human Services (HHS) with a long-term strategy for improving the collection and use of racial and ethnic data across the Department and its agencies and, more specifically, for the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health. It will require a major commitment of time and resources by the Department and its agencies if the recommendations in this report are to become a vehicle of significant change. This report is the result of a joint venture between two racial and ethnic data work groups, the HHS Data Council's Working Group on Racial and Ethnic Data and the Data Work Group for the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health. Because the projects and the memberships of these two data work groups greatly overlap, one comprehensive report was produced. A list of the data group members appears in Appendix A.
Need for Improving Racial and Ethnic Data
The 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 identify needs, document problems with data, and develop solutions. As a result, numerous records of racial and ethnic data problems and recommendations appear in HHS reports, including the 1985 Report of the Secretary's Task Force on Black and Minority Health; Improving Minority Health Statistics, Public Health Service (PHS) Task Force on Minority Health Data, 1992; Recommendations to the Surgeon General to Improve Hispanic/Latino Health, Surgeon General's Hispanic/Latino Health Initiative, 1993; and Hispanic Agenda for Action: Improving Services to Hispanic Americans, A Report to the Secretary, Departmental Working Group on Hispanic Issues, 1996. While a number of improvements have been made in racial and ethnic data, serious gaps remain.
Numerous documents have been submitted to HHS addressing racial and ethnic data problems. These include a 1992 report to the National Center for Health Statistics (NCHS) by the American Indian Health Care Association titled, Enhancing Health Statistics for American Indian and Alaska Native Communities: An Agenda for Action; a 1993 letter to the Assistant Secretary for Planning and Evaluation from the National Asian Pacific American Families Against Substance Abuse, Inc.; and a 1995 report by delegates to the First National Health Summit of Asian American and Pacific Islander Health Organizational Leaders, Recommendations for Improving the Health of Asian Americans and Pacific Islanders.
HHS Initiative to Eliminate Racial and Ethnic Disparities in Health
Currently, HHS is working on an Initiative to Eliminate Racial and Ethnic Disparities in Health. This effort 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. The work groups formed to address the health problem areas in each of these six focus areas had difficulty in finding relevant, complete, and accurate data to measure the racial and ethnic disparities. As a result, they documented the data problems and made recommendations for improving the data. Their recommendations have been incorporated into this report.
The Administration's Initiative on Measures of Discrimination
The Administration is also pursuing a multiple year initiative to measure and report on racial and ethnic discrimination in key sectors of society including health care. This initiative, building on the work of the President's Initiative on Race, is designed to document and further the Nation's understanding of racial and ethnic discrimination in the U.S. Created to expand and improve the government's current statistical ability to measure and track racial and ethnic discrimination in criminal justice, labor markets, education, health, and housing, the initiative aims to present the public with an accurate assessment of the state of racial and ethnic discrimination in the U .S.
One of the significant challenges facing the Department in responding to the Administration's initiative is the lack of appropriate racial and ethnic data. As already noted, the eliminating disparities initiative work groups had difficulty finding sufficient, appropriate data to measure racial and ethnic disparities. Measures of racial and ethnic discrimination are equally, if not more, data-dependent, in that they focus on one of many potential causes of disparity. Given the gaps in data reflecting racial and ethnic health disparities, it is likely that as the Department assesses how effectively to measure racial and ethnic discrimination, comparable gaps in racial and ethnic data will surface.
Because the Department is still developing policies and direction for the measures of discrimination initiative, this report only addresses the subject in a cursory manner. A separate report will be produced on measures of discrimination in the future.
Relevant Data Developments
Within the Department, a number of current and planned data activities are underway that will have an impact on racial and ethnic data. These include implementation of the revisions to the Office of Management and Budget (OMB) Race and Ethnic Standards for Federal Statistics and Administrative Reporting (OMB Directive No. 15), the HHS population standard for the age standardization of death rates, and the International Statistical Classification of Diseases and Related Health Problems and its Clinical Modification (ICD-10 and ICD-10-CM).
OMB Classification Standards
The new OMB classification standards (1) introduce the reporting of more than one race for multiracial persons; (2) separate the Asian or Pacific Islander category into two categories--one labeled Asian and the other Native Hawaiian or Other Pacific Islander; (3) change the term Hispanic to Hispanic or Latino; (4) change black to black or African American; (5) strongly encourage that self-identification be used; and (6) maintain the two question format for race and Hispanic ethnicity when self-identification is used, specifying that the Hispanic origin question should precede the race question. These revisions are expected to alter the counts of racial and ethnic populations derived from the various Federal data collection systems, as well as from those non-Federal systems that implement them.
OMB has issued draft guidelines for tabulating multiple race responses for use by Federal agencies. The guidelines address complications involving historical and trend analysis, population denominators, bridging between the old and new standards, and summary data categories. In addition to the data considerations surrounding the new standards, there will be social implications, as individuals now have the option of choosing more than one race.
Released by the Secretary in October 1997, the HHS Policy for Improving Race and Ethnicity Data requires, with few exceptions, that racial and ethnic data be collected for HHS-maintained data collection systems. OMB requires that the new Federal standards for racial and ethnic data be used by Federal programs other than the Bureau of the Census (Census will use them in the year 2000 decennial census) as soon as possible, but not later than January 1, 2003. This report assumes that HHS will continue to implement the new OMB standards and follow the associated OMB tabulation guidelines according to the specified schedule. The HHS plan presented in this report takes account of the new OMB standards and guidelines.
Age Standardization of Death Rates
The U.S. population in 1940 has been used as the standard for age-adjusting death rates. Last year, HHS has adopted a new policy to shift the population standard from the 1940 population to the year 2000 projected population. NCHS has initiated this change with deaths occurring in 1999, but the standards apply to all other HHS agencies. Researchers, however, may use other standards as appropriate to their work.
Because of the larger proportion of older people in the year 2000 standard population, age-adjusted death rates will be substantially higher than those based on the 1940 standard. The new standard will have different effects on trends in age-adjusted death rates for specific causes of death. Most important for this report, the new standard will narrow racial and ethnic differentials in age-adjusted death rates. NCHS has conducted analyses to demonstrate the effect of the new year 2000 standard on racial and ethnic death rates for specific causes. This report recommends that NCHS perform more such analyses to provide a more detailed list of specific causes that are affected by the new standard population.
The narrowing of racial and ethnic gaps in death rates will have political implications for Federal and non-Federal groups that advocate for racial and ethnic groups. For example, the Indian Health Service (IHS) will need to explain to Congress why the health status of the American Indian and Alaska Native population suddenly appears to improve greatly relative to the general population, starting with data year 1999.
International Classification of Diseases (ICD-10)
Implementation of ICD-10 for mortality records (beginning January 1, 1999) and ICD-10-CM for clinical records (beginning October 1, 2001, or beyond) will further complicate the landscape for statistics on racial and ethnic groups. It will be necessary to address historical and trend analysis and to create bridges between the 9th and 10th revisions of the codes. Work is underway in the Department regarding the implementations of ICD-10 and ICD-10-CM, and this report assumes that these implementations will proceed as planned.
Content and Organization of Report
The main purpose of this report is to present an HHS plan for improving the collection and use of data for racial and ethnic minority populations. The report builds on the findings of past groups and recommendations that were re-evaluated in light of current/expected program and data developments and resource levels. Steps are specified for improving the collection and use of racial and ethnic data in general, and, where appropriate, provides specific examples for the six focus areas of the eliminating disparities initiative. The recommendations in this report 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 HHS Data Collection Activities, which is included in Appendix G.
Chapters 2 through 6 provide the foundation for the long-term plan. Chapter 2 addresses contributing factors to racial and ethnic gaps in health. This is followed by summaries of racial and ethnic data concerns raised in relation to the health disparities and measures of discrimination initiatives, Healthy People 2010, and previous HHS reports and outside documents. The data concerns are put into perspective in Chapter 6 with a discussion of how racial and ethnic data are used at Federal, State, and local levels, and in the private sector.
The heart of this report is chapter 7, in which the elements of the HHS long-term strategy for improving racial and ethnic data are detailed. Recommendations are grouped into four categories: (1) data collection, (2) data analysis and interpretation, (3) data dissemination and use, and (4) data research and maintenance. These recommendations, for the most part, respond to specific gaps or questions raised by a wide range of policymakers, planners, advocacy groups, providers, and others. Key drivers are the eliminating disparities initiative, Healthy People 2010, and reports and correspondence from advocacy groups. Other recommendations have been included to fill some fundamental gaps in racial and ethnic data that represent minimum data for demographic and health analyses (e.g., the need for site-specific cancer prevalence and incidence rates, heart disease and stroke prevalence and incidence rates, and post-censal population estimates by age and gender and socioeconomic characteristics at the State-level and below). The intent of the recommendations is not just to have more data but better data on racial and ethnic groups.
Data gaps are also associated with other special populations based on age, gender, sexual orientation, and disabilities. Although these special populations are not part of the charge of the Working Group on Racial and Ethnic Data, it is recommended that the Department also determine how to better address their data needs.
Because it is important that this report result in improvements to the state of racial and ethnic data, a detailed implementation plan will be developed as a follow-on document. The Working Group on Racial and Ethnic Data will work with the HHS Data Council to craft a detailed implementation plan--action items, priorities, responsible office(s), resource estimates--and establish an oversight/coordinating entity. The Department is urged to fully support the implementation of the recommendations and seek funding as appropriate. 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/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 to guide policy and allocate resources must be implemented.