October 24, 1997
TO: Heads of Operating Divisions
Heads of Staff Divisions
SUBJECT: HHS Policy for Improving Data - ACTION
Agencies and programs of the Department require data on race and ethnicity for a variety of purposes ranging from research, public health surveillance, program administration and civil rights enforcement. While many HHS data collection systems do include data on race and ethnicity, not all do so and no clear policy currently exists. Accordingly, at the recommendation of the HHS Data Council, I am issuing the attached policy on the inclusion of information on race and ethnicity in HHS data collection systems. The policy reaffirms the HHS commitment to the appropriate inclusion of data on minority groups in our research, services and related activities. The policy also will help us monitor HHS programs to determine that funds are being used in a nondiscriminatory manner and to promote the availability of standard race and ethnicity data across agencies when the Department is required to make a coordinated response to major health and human services issues. It is consistent with policies already adopted by the National Institutes of Health and the Centers for Disease Control and Prevention regarding the inclusion of minorities in research.
In general, the policy described in the attached material requires the inclusion of information on race and ethnicity in all HHS-sponsored data collections systems, with certain exceptions. The policy also requires that the minimum standards specified by the Office of Management and Budget (OMB) for race and ethnicity data collection and reporting be employed, including any subsequent revisions to the OMB standards. The policy will go into effect as of November 1, 1997. I am directing Heads of OPDIVs and STAFFDIVs to implement the policy within your organizations in accordance with normal agency data planning, OMB clearance, data collection and analysis cycles.
Please make every effort to assure the successful implementation of this policy. Questions about the policy should be directed to your agency's representative on the HHS Data Council (attached).
Donna E. Shalala
HHS Data Council
Policy Statement on Inclusion of Race and Ethnicity
in HHS Data Collection Activities
This document describes the Department of Health and Human Services (HHS) policy on the inclusion of racial and ethnic categories in HHS funded and sponsored data collection and reporting systems. This inclusion policy covers all programs of the Department, including both health and human/social services. It is consistent with existing inclusion policies that have been implemented by the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). This inclusion policy clearly states that the minimum standard categories of racial and ethnic groups specified in the Office of Management and Budget (OMB) Directive 15 and future revisions thereof should be collected and reported in all HHS data systems except those exempted by this policy. The need for the HHS-wide policy is in part caused by an incomplete adherence to use of the standard categories in the OMB Directive 15 by HHS agencies, even when their use is feasible and appropriate. OMB Directive 15 specifies the minimum racial and ethnic categories that are to be used when race and ethnicity are included in data collection and reporting; it does not require that race and ethnicity be included in data collection and reporting. This inclusion policy does require the collection and reporting of racial and ethnic groups in HHS data collection activities.
This policy reaffirms the HHS commitment to the appropriate inclusion of data on minority groups in its research, services, and related activities. This inclusion policy is needed to help monitor HHS programs to determine that Federal funds are being used in a nondiscriminatory manner and to promote the availability of standard racial and ethnic data across various agencies when the Department is required to make a coordinated response to major health and human services issues. Implementation of this policy will help to identify major health conditions of minority populations, monitor progress in meeting their needs, and help to ensure nondiscrimination in access to and provision of appropriate HHS services for various racial and ethnic groups. HHS encourages the expanded collection of data that will improve research on disparities in health status and social services needs between minority groups and the general population. This inclusion policy applies to HHS program administrative records as well as research and survey data but does not cover HHS personnel employment data. Programs that are directed to minority populations have exemptions; but they are encouraged to collect and report data on groups within their target minority populations.
I. INTRODUCTION AND POLICY RATIONALE
The Department of Health and Human Services is the United States government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves. Consistent with its mission, the Department of Health and Human Services is committed to the following goals: (1) addressing racial and ethnic disparities in health; (2) ensuring that members of all racial and ethnic groups are provided appropriate levels of health and social services, and (3) assuring nondiscriminatory health care access and treatment and access to other Departmentally funded or directly operated services.
A recent review of HHS data systems found that: (1) some HHS data systems do not collect data on the race and ethnicity of its respondents or participants, (2) in some cases, racial and ethnic data have been collected but not reported, and (3) minimum racial and ethnic categories reported are sometimes not consistent across the various HHS agencies. While the available data indicate important disparities in health conditions between minority groups and the general population, recent reports to HHS identified major omissions of the racial and ethnic data necessary to address the minority populations' specific health and social services needs (See References).
B. Rationale for an HHS Policy on the Inclusion of Racial and Ethnic Data in HHS Data Collection and Reporting Activities
The need for an HHS-wide policy on the inclusion of data on racial and ethnic groups in HHS data collection and reporting activities is based on the following:
1. Many Departmental and Public Health Service reports on the health status of minorities during the past decade have indicated that the limited data available show racial and ethnic minorities have significant health disparities compared with the rest of the population. Consistent, reliable racial and ethnic data are needed to develop and implement effective prevention, intervention, treatment, and other needed health programs, policies, and services.
2. The Department needs standard and reliable racial and ethnic data across the various HHS agencies and major operating components when it is necessary for the Department to make a coordinated response to major health and social services issues.
3. The Department is committed to developing meaningful standards and criteria that would improve its ability to determine and analyze the efficacy of HHS data collection activities for ensuring nondiscrimination in all HHS funded and directly operated programs.
4. Section 80.6(b) of CAR 45 Part 80 implementing Title VI of the Civil Rights Act of 1964 requires each recipient of Federal financial assistance to keep such records as "the responsible Department official or his designed may determine to be necessary to enable him to ascertain whether the recipient has complied or is complying with this part. For example, recipients should have available for the Department, racial and ethnic data showing the extent to which members of minority groups are beneficiaries of and participants in Federally assisted programs." A policy on the inclusion of racial and ethnic categories would provide uniform guidance to all HHS programs regarding data that may be used to help determine their compliance with Title VI.
5. A recent review of HHS data systems has found that not all HHS data systems collect data on the race and ethnicity of its respondents or participants when the subject matter is relevant to important HHS goals. This is partly because OMB Directive 15 provides the minimum racial and ethnic categories to be used in Federal data collections but does not require that all relevant data systems must collect data on race and ethnicity.
6. Recent HHS task forces and initiatives on minority health have identified major omissions of needed data on racial and ethnic groups to address their specific health and social services needs. These task forces have recommended to several agencies that they need both improved and more consistent collection and reporting of health and social services data on racial and ethnic groups. The number and range of these recommendations covering data collection, analysis, and dissemination suggest the need for a Department-wide policy.
The purposes of this inclusion policy, therefore, are: (1) to ensure that data on race and ethnicity are collected in all HHS systems obtaining information relevant to the Department's goals, (2) to ensure that such data are collected and reported in a standardized manner, and (3) to address the various major health data omissions identified for minority racial and ethnic groups.
Agencies and Operating Divisions of HHS are expected to develop any mechanisms needed to implement this policy. When implemented, the policy will enable the Department to more effectively fulfill its mission to assure the health and well-being of the Nation and to ensure, on an ongoing basis, that Federal funds are being used in a nondiscriminatory manner. Moreover, the implementation of this policy would help satisfy the Department's need for consistent and relevant racial and ethnic data when its response to major health and social services issues must be based on data from various of its components.
II. POLICY ON THE COLLECTION AND REPORTING OF RACE AND ETHNICITY
The HHS-wide policy on the inclusion of race and ethnicity in the data collection and reporting for programs, research, and survey activities funded or sponsored by HHS or its Agencies or other major operating components is as follows:
A. Inclusion of Race and Ethnicity: Data on race and ethnicity will be included in all data collection and reporting activities covered by this policy.
B. Minimum Standard of Racial and Ethnic Categories: For Federal systems of records, the minimum standard for the basic racial and ethnic categories will be OMB Directive 15 and any subsequent revisions. All references to OMB Directive 15 in this policy for Federal systems of records are to be understood as encompassing all subsequent revisions to Directive 15. For non-Federal systems of records, the minimum standard for civil rights compliance purposes will be the current OMB Directive 15 minimum standard. However, HHS encourages use of subsequent revisions to the Directive in non-Federal systems of records, when feasible.
C. Groups within the Minimum Standard OMB Directive 15 Racial and Ethnic Categories: HHS recognizes the diversity of the population within each of these minimum categories and encourages the inclusion of subgroups when such inclusion improves the usefulness of the data.
D. Administrative Level of Reporting for Program Services Data: Wherever possible, racial and ethnic data regarding populations served by HHS-funded programs should either be collected and reported at the providing organizational level and program beneficiary level or be available at that level through use of existing data systems (e.g., matching of enrollment and claims data) so as to be useful in assessing compliance with Title VI of the Civil Rights Act of 1964. Such information would be collected either directly from such entities, or through use and/or matching of existing administrative data sets, including upgrading of such data sets as appropriate to contain information consistent with Directive 15 reporting categories.
E. Collecting and Reporting Data on Race and Ethnicity: Data on race and ethnicity must be collected, analyzed, and reported in an objective, accurate, and useful manner. Both the collection and reporting of the data must be sensitive to racial and ethnic communities' concerns about potential misuse or abuse. Such data will not be used by the Department in a way that would stigmatize certain populations or to suggest a biological or genetic connection based on nongenetic studies or when race and ethnicity are actually surrogates for other risk factors. Only those racial or ethnic groups with adequate sample sizes to provide statistically reliable data should be reported. Information on the validity and reliability of the data should be included whenever possible to enable the readers to judge the credibility of the findings.
F. Data Collection and Reporting Activities Covered by this Policy: This policy applies to the following types of data collection systems:
1. Statistical data collections (e.g., vital statistics, disease registries, and other research and survey data such as those collected in national health status surveys, longitudinal research surveys, and studies of access, utilization, and financing of health and social services).
2. Administrative records (e.g., those used for research, for general program administrative, contracts, and grants reporting, and for assessing civil rights compliance).
3. Research, evaluation, and other study projects (e.g., intramural research).
4. Applications, grants, and contract proposals submitted to the Department and its agencies or major operating components that collect data from the public.
5. Reporting systems for civil rights compliance under Section 80.6(b) of CAR 45 Part 80, implementing Title VI of the Civil Rights Act of 1964.
III. EXEMPTIONS FROM THE POLICY
A. Exemptions to this inclusion policy for data on race and ethnicity for HHS funded or sponsored data collection activities are as follows:
1. The data collection activities of an HHS Agency, component, or HHS funded program that are directed to one or a limited number of minority racial or ethnic groups are not required to include all the minimum standard categories of OMB Directive 15 but are encouraged to collect and report data on the subgroups within their targeted minority group. An example is the Indian Health Service.
2. A services program may be exempted from the minimum standard categories for civil rights compliance reporting when the program is directed by Federal law to one or a limited number of minority racial or ethnic groups and would include data on only the minority groups or subgroups to which the program was directed.
3. When consultation with the Agency statistician determines that the data on particular racial and ethnic groups are considered statistically unreliable, then such racial and ethnic groups should not be reported separately unless accompanied by the appropriate caveats.
4. Data collection and reporting for activities within HHS that are not health or human services program administrative, research, survey, or services reporting or assessment are not subject to this policy. In some cases, these areas are covered by the policies and regulations of other Departments (e.g., employment activities and information are covered by the rules and regulations of the Office of Personnel Management).
5. Data from activities that have not been sponsored or funded by HHS but which are used by HHS for regulatory, research, or other purposes may be excluded. An example is clinical trial data that the FDA receives in support of product approval.
6. U.S. commonwealths, trusts, and territories and other areas where the Bureau of Census does not use OMB Directive 15 standard categories in either the questions in the decennial census or in reporting the responses are exempt from this policy.
7. Special exemptions may be granted on a case-by-case basis by the HHS Secretary or a designee.
IV. Racial and Ethnic Data Collection Enhancement Options
This HHS-wide inclusion policy requires only the inclusion of data on race and ethnicity as defined by OMB Directive 15 or any subsequent revisions. It does not require but does encourage HHS-wide collection and reporting of cultural or other data variables related to race or ethnicity. The Department encourages its Agencies, components, and funded programs to improve the availability of racial and ethnic data to better understand and improve the health and well-being of minority racial and ethnic populations. Therefore:
A. The Department encourages the collection of data on variables other than race and ethnicity that may be useful in assessing and improving the health and well-being of minority populations and the provision of needed health and social services. Program officials and researchers are encouraged to collect, study, and report on cultural background, socioeconomic status, and other important characteristics and conditions that can assist HHS to fulfill its mission of improved health and well-being for all its constituents.
B. The Department supports innovative uses of currently available data consistent with the Privacy Act and confidentiality constraints. Where statistically and methodologically appropriate, HHS encourages pooling the data from several years, analyses such as cross-comparisons from different data sets, and specialized studies and linkage of data sets. These techniques can be used with existing data to enhance our understanding of the health status and social services needs of minority racial and ethnic populations.
C. In cases in which HHS funded or sponsored data activities rely on compiling data collected by States or other entities that do not include racial and ethnic data or do not use the OMB Directive 15 Standard, the Department encourages such primary data collection entities to review their systems and make changes as appropriate.
V. RELATED POLICIES
Both the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) have policies on the inclusion of racial and ethnic minorities in research. These two existing inclusion policies are consistent with this HHS-wide policy and should not require revision regarding statistical reporting.
Asian American and Pacific Islander Health Organizational Leaders. Recommendations for Improving the Health of Asian Americans and Pacific Islanders. Report by delegates to the First National Health Summit of Asian American and Pacific Islander Health Organizational Leaders held in San Francisco, California. June 21-24, 1995.
American Indian Health Care Association. Enhancing Health Statistics for American Indian and Alaskan Native Communities: An Agenda for Action. A report to the National Center for Health Statistics. Hyattsville, Maryland, December 1992.
Centers for Disease Control and Prevention. Use of Race and Ethnicity in Public Health Surveillance. Summary of the CDC/ATSDR Workshop. MMWR 1993;42(No. RR-10).
Department of Health and Human Services Working Group on Hispanic Issues. Hispanic Agenda for Action: Improving Services to Hispanic Americans. A Report to the Secretary. Washington, D.C., July 29, 1996.
Department of Health and Human Services Data Council's Ad Hoc Working Group on Racial and Ethnic Data. Meeting Current and Future Demands for Racial and Ethnic Data for Health and Human Services. Rockville, Maryland, July 1996 Draft.
Department of Health and Human Services, National Center for Health Statistics. Setting a Research Agenda: Challenges for the Minority Health Statistics Grants Program. U.S. DHHS/CDC/NCHS Working Paper Series No. 40. Hyattsville, Maryland, December 1991.
Heckler, Margaret. Report of the Secretary's Task Force on Black and Minority Health. Volume I: Executive Summary. U.S. Department of Health and Human Services. Washington, D.C., 1985.
National Asian Pacific American Families Against Substance Abuse, Inc. Letter to Mr. Peter Edelman. December 17, 1993.
Public Health Service Task Force on Minority Health Data. Improving Minority Health Statistics. U.S. Public Health Service. Washington, D.C., 1992.
U.S. Surgeon General's Hispanic/Latino Health Initiative. One Voice, One Vision -- Recommendations to the Surgeon General to Improve Hispanic/Latino Health. Washington, D.C., June 1993.