March 27, 2003
The Honorable Tommy G. Thompson
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201
Dear Secretary Thompson:
For almost four decades, the National Committee on Vital and Health Statistics (NCVHS) has monitored and advised your office on important initiatives to improve population-based data for racial and ethnic minorities. The Committee first addressed the severe inadequacies in health information for racial and ethnic minorities in the 1960s. Most recently, the NCVHS established a Subcommittee on Populations with the charge of focusing on (a) population-based health data concerning the U.S. population generally and (b) data about specific vulnerable groups within the population that are disadvantaged by virtue of their special health needs, economic status, race, ethnicity, language, disability, age, or area of residence.
The Subcommittee on Populations has made monitoring the impact of the Office of Management and Budget’s (OMB) changes in categories for race and ethnicity a priority. The Subcommittee works to assess the implications of these changes for tracking longitudinal patterns in the health of subpopulations. When appropriate, recommendations for using these new standards have been submitted to your office and relevant federal agencies. The Subcommittee also serves as a public forum for discussions on the use of race and ethnicity categories in health data and whether the data collected by federal agencies are sufficient to determine whether health disparities exist in racial and ethnic groups, in support of efforts to eliminate those disparities. In February 2002, the Subcommittee began a series of hearings designed to investigate the collection and use of data on racial and ethnic groups by data systems funded and maintained by the Department of Health and Human Services (HHS).
The Subcommittee has held three hearings, received input at its regularly scheduled meetings, reviewed previous materials and publications and gathered materials on the collection and use of data on the health and vital statistics of racial and ethnic groups and whether the data currently collected in federal systems are sufficient for the identification of the health disparities of racial and ethnic groups in the United States and the Territories. The first hearing, held in February 2002, included representatives of several of the Department’s population-based surveys, provider-based surveys and administrative data systems in addition to users of these data. At the second hearing, held in September
2002, a number of American Indians and Alaska Natives discussed their needs and concerns about health and vital statistics data and the ability, through current data collection mechanisms, to determine and assess health disparities in their populations.
The third hearing, held in November 2002, focused on the collection and use of vital statistics and health data on race and ethnicity at the State level and whether the data help measure disparities in racial and ethnic populations. At this session, the Subcommittee heard from representatives of State agencies, professional organizations, and federal agencies involved in the collection of State health data and vital statistics. The Subcommittee intends to hold additional hearings with such groups as Native Hawaiians, Asian and Pacific Islanders and on topics such as primary language and the use of translations in data collection materials.
In general, the Subcommittee found that the federal government has taken a number of positive steps to improve the collection of data on race and ethnicity that makes it possible to monitor the health care quality of all populations. In particular, the Office of Management and Budget has issued sets of guidance such as the Guidance on the Aggregation and Allocation of Data on Race for use in Civil Rights Monitoring and Enforcement and Provisional Guidance on the Implementation of the 1997 Standards for Federal Data on Race and Ethnicity. The second guidelines provide health agencies multiple options for bridging the multiple race responses under the new Federal Standards for the collection of data on race and ethnicity. Despite these multiple options, there appears to be the need for greater instruction on how to present multiracial data, which Census denominators should be used to calculate rates, how to collect data on subgroups, what other data should be collected (e.g. socioeconomic status, primary language), and standardized methodology for the aggregation of subgroups (e.g. Cape Verdeans, Brazilians, Nigerians and others) into larger categories.
The Subcommittee has heard a number of consistent concerns about the compelling data needs in American Indian and Alaska Native populations, that suggest that we should communicate with you at this early stage of our process. While we intend to prepare a series of reports based on our hearings, the testimony that we have received at this point, coupled with a review of the Committee’s past recommendations to your office and other federal agencies, convinced us to share what we have heard in support of the enormous efforts underway at DHHS to eliminate health disparities in racial and ethnic minorities and to improve the health of all people.
Similarly, States presented the Subcommittee with a number of unique dilemmas that they encounter in the interface of data collection reporting requirements on race and ethnicity. States with diverse ethnic populations need a better system for categorization and guidance from the federal level.
In light of the testimony that the Subcommittee received, NCVHS reviewed its past recommendations to the Secretary and other federal agencies on the collection and use of data on race and ethnicity to determine those areas that are in need of urgent attention. Additional departmental interventions, guidance, and funding would be helpful in ensuring that the collection of data on race and ethnicity and the health disparities of racial and ethnic groups can support and enhance the Department’s efforts to promote quality health for all.
We recommend that HHS should expand the multifaceted approach to obtain data on racial and ethnic populations in programmatic, research, administrative and survey data supported by the Department. Whereas current systems do reasonably well in collecting data on the White and Black populations, and to a lesser extent Hispanics populations, information is seriously inadequate on the Asian, Hawaiian, and other Pacific Islander and American Indians and Alaska Native populations. Strategies would include:
a. Improve collection of data on language required to allow full participation of all ethnic populations in health communications.
b. Collect primary race data in surveys to bridge the transition between the old data collection and the new data collection so that we can continue to monitor trends.
c. Translation of all relevant documents necessary for the collection of data on populations with limited English proficiency (LEP).
d. Improve the capacity for analyzing data on the economic and social environments of individuals via linkage of person-level data and appropriate area level data to provide greater insights into the structural and environmental causes of health disparities.
e. Support the development of studies targeted by population or geographic area.
We appreciate the opportunity to offer these comments. At a later date, we will forward recommendations on: translation, Healthy People 2010, American Indian/Alaska Native data, the Territories, monitoring health disparities at national and State levels, needed methodological research, and data analysis and dissemination.
John Lumpkin, M.D., M.P.H.
Chair, National Committee on Vital and Health Statistics
cc: HHS Data Council, Co-Chairs