Improving the Collection and Use of Racial and Ethnic Data in HHS

JOINT REPORT OF THE

HHS Data Council Working Group on Racial and Ethnic Data

AND

The Data Work Group of the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health

December, 1999

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.

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.

2. Contributing Factors to Racial and Ethnic Gaps in Health

Numerous studies have determined that race is not just a biological category. "Race is a societally constructed taxonomy that reflects the intersection of biological, cultural, socioeconomic, political, and legal determinants, as well as racism. . . . Larger societal factors -- socioeconomic, political, and legal -- affect health through intermediary mechanisms and processes, including health practices, psychological stress, environmental stress, psychological resources, and medical care." (Williams, 1993).

Genetic factors alone cannot explain trends in racial and ethnic differences in health. More than 90 percent of genetic diversity occurs within racial and ethnic groups rather than between groups. In diseases in which genetic factors play a role, these trends may often be explained by differing environmental factors, which then have their greatest impact on persons who are at greatest risk genetically (Robert Wood Johnson Health Policy Research Program, 1998 letter). For example, the rate of diabetes and obesity among the Pima Indians in Arizona differs from that of the Pima Indians in Mexico.

It may be necessary to expand the currently accepted categories of race. As the scientific community gains a greater understanding of the race concept, more specific categories should become clearer, even within the black and white categories.

Although persistent low income can be a good predictor of mortality regardless of race, racial differences in health are markedly, but not wholly, explained by income. Perceived discrimination and race-related stress also play a role. Behavioral risk accounts for only a small portion of income disparities across age, sex, and race categories.

Public health research into the reasons for racial and ethnic health disparities has focused largely on differences in socioeconomic status (SES). Although lower SES is probably the most powerful single contributor to premature morbidity and mortality (Lantz, et al., 1998), the association between race and ethnicity and SES is complex and cannot fully explain differentials in health status.

While urging attention to the influence of socioeconomic factors, especially income, minority health researchers caution against using SES as a surrogate for race and ethnicity. The direct and indirect effects of racism need to be considered as well. Research suggests that racism and discrimination can induce psychological distress, leading to poor health among members of racial and ethnic minority groups, particularly among blacks (James, et al., 1983). Racism and discrimination can also restrict access to health care, public education, housing, and recreational facilities.

Housing discrimination is one of the primary mechanisms by which racism produces differential socioeconomic outcomes. Through discriminatory practices (such as redlining), racially distinct residential zones for blacks and other minorities are sustained, creating adverse effects on opportunities for access to health care services, education, employment, and socioeconomic mobility.

Poor housing may contribute to a number of adverse health and educational outcomes. Severe crowding and indoor air pollution may cause or exacerbate many chronic illnesses, sometimes resulting in long-term effects. Deteriorating and crime-ridden neighborhoods contribute to experiences of stress and barriers to accessing services. Neighborhood quality and quality of associated services vary considerably depending on the racial and ethnic composition of the neighborhood. Certain black and Hispanic households tend to report more problems in their neighborhoods, including crime, litter, housing deterioration, and poor public services.

Although racial and ethnic minority groups have experienced substantial improvements in social and economic well-being during the second half of this century, health disparities between groups persist and in, some cases, have widened. Blacks, Hispanics, Asian, and Native Hawaiian or other Pacific Islanders (especially new immigrants and refugees), and American Indians/Alaska Native populations continue to experience social and economic disadvantages in many arenas (Council of Economic Advisors, 1998).

The poverty rate for non-Hispanic whites remains well below that for U.S. racial and ethnic minorities. Although many of the disparities in poverty rates can be explained by differences in factors such as age distribution, family structure, and educational attainment, substantial differentials persist even among individuals with similar characteristics. In 1997, 8.6 percent of non-Hispanic whites lived in poverty compared to 26.5 percent of Blacks, 14 percent of Asian, Native Hawaiian, or other Pacific Islanders, 27.9 percent of Mexican Americans, and 34.2 percent of Puerto Ricans.

Educational attainment is a powerful predictor of economic status and health. Although educational attainment in the U.S. has been steadily increasing, and high school completion rates for blacks have approached parity with whites, approximately 47 percent of Hispanic adults over age 25 have not completed high school. Among 25-29 year olds, 33 percent of non-Hispanic whites, 14 percent of non-Hispanic blacks, and 11 percent of Hispanics had a 4-year college degree.

Economic return for the same educational attainment is lower for racial and ethnic minorities. Among 25-34 year old men with a bachelor's degree, the median income in 1998 was $39,966 for whites, $30,415 for blacks, and $32,853 for Hispanics.

Wealth (assets minus liabilities) is a better indicator of permanent economic status than single year income. Greater wealth allows a family to maintain their standards of living when income falls because of job loss, health problems, or family changes. Disparities in asset holding across racial and ethnic groups are large, exceeding disparities in income. Black and Hispanic households are less likely than white households to own stocks or mutual funds, have equity in their homes, or own a private pension plan (e.g., IRA). The median value of assets held by whites is higher than for blacks and Hispanics. In 1993, the household net worth maintained by whites was more than 10 times the net worth maintained by either blacks or Hispanics.

Disproportionately high housing costs limit a household's ability to afford other necessities such as health care services and purchase of medicines. All U.S. racial and ethnic minority populations are nearly twice as likely as whites to spend at least 50 percent of their incomes on housing costs. (The Department of Housing and Urban Development (HUD) considers a household to have a "worst case" housing need if housing costs exceed 50 percent of household income.)

High unemployment rates persist for many racial and ethnic minorities. Unemployment rates for blacks have been roughly double the rates of unemployment for whites for more than 20 years. While such disparities reflect differences in educational attainment, substantial differentials persist even among blacks, whites, and Hispanics with similar levels of education.

Health insurance coverage, either public or private (usually employment-based), is a key indicator of access to medical care and is linked to income and employment status. Hispanics have the highest uninsured rates for every income level.

Having health insurance is no guarantee to access to quality health care. Blacks within similarly insured populations (e.g., Medicare) are less likely to receive certain diagnostic and treatment procedures for cardiovascular disease, even after severity of disease and supplemental insurance are taken into account. Within similarly insured populations, blacks are more likely to be hospitalized for septicemia, debridement, and amputations, suggesting that poor quality of care is received by blacks with diabetes (Gornick, et al., 1996).

Having a usual source of care is one indicator of access and quality. Almost 30 percent of Hispanics lacked a usual source of care, compared to 20.2 percent of blacks and 15.5 percent of a combined category of whites and other racial/ethnic groups. Among those who had a usual source of care, blacks and Hispanics were more likely than whites to have hospital-based (as opposed to office-based) care (Weinick, et al., 1999). This finding has implications for the quality of care received.

Linguistically appropriate services are essential to quality of care for racial and ethnic minorities with, or at risk of developing, chronic illnesses. Approximately 4 million Hispanics, 1.6 million Asians, 282,000 blacks, and 77,000 American Indians had language communication constraints in 1990. The scarcity of health care providers skilled in both language and cultural competency also has a negative influence on the quality of care available to racial and ethnic minorities.

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 (http://raceandhealth.hhs.gov/).

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.

HIV/AIDS

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.

4. Measures of Discrimination

The President's measures of discrimination initiative will further test the availability of racial and ethnic data in HHS data sets and may raise further issues concerning gaps in such data. This initiative will require drawing methodological distinctions between measuring disparities in access, services, health status and quality of care, and measuring how intentional and/or subconscious biases may restrict access or result in differential quality of care based on race or ethnicity. Data may reveal disparities, but it is considerably more difficult to isolate specific causes of differential health outcomes, including measuring the extent to which racial and ethnic discrimination play a role.

Many studies have identified differences, according to race and sex, in the treatment of patients with cardiovascular disease in the U.S. A recent New England Journal of Medicine (NEJM) article on the effects of race and sex on physicians' recommendations for cardiac catheterization reports on a study that addressed directly the question of physician responsibility relative to treatment recommendations for patients with various types of chest pain (Schulman, et al., 1999). The study used a computerized survey instrument and videotaped actors portraying patients with particular characteristics. The methodology used by the Shulman, et al. and their results were criticized in a NEJM Sounding Board article and further called into question in subsequent letters to the journal. Nevertheless, there are certain lessons that can be learned. In a sense, this study utilized a type of paired testing, a methodology used most prominently by HUD as a measure of the extent of racial and ethnic discrimination in housing markets. In effect, paired testing utilizes two subjects who have like symptoms, but who belong to different racial groups or have disparate language skills. Shulman, et al. suggest possible means by which HHS could measure racial and ethnic discrimination in other health care settings. The Department's activities in support of the new Presidential Initiative on measures of racial and ethnic discrimination will place further demands on ensuring the adequacy and accuracy of racial and ethnic data in the Departmental data sets. Currently, HHS is supporting a comprehensive review of the state of the art in discrimination measurement in health care. Consequently the focus of future HHS activity, data collection, methodology design and analysis will depend on the outcome of this effort. Whatever is done, however, will place further demands on systems for detailed racial and ethnic data.

A complicating factor in assessing discrimination is that the diversity of the U.S. population will be changing rapidly over future decades. As a result, the key racial and ethnic groups who need to be covered could change as a result of shifting patterns of immigration. Immigration is an area that needs to be carefully studied.

As part of the measures of discrimination initiative, in FY 2000, HHS, as a first step, is expected to assess what current data sets or surveys could be used or supplemented to measure racial and ethnic discrimination and determine whether new methodologies need to be developed and tested. The goal of the overall measures of discrimination initiative is to expand existing knowledge on appropriate and credible ways to measure the presence of racial and ethnic discrimination and to support empirical studies that measure the scope of racial and ethnic discrimination using new and existing techniques and data.

However, given the early nature of the measures of discrimination initiative, few specific data gaps relating directly and only to measures of racial or ethnic discrimination have been identified. As we endeavor to develop methods and identify effective measures of racial or ethnic discrimination, it is probable that racial and ethnic data gaps beyond those noted elsewhere in this report may arise as a significant impediment to successful use of current data sets.

5. Summary of Data Concerns

Racial and Ethnic Data Issues for Healthy People 2010

Advocacy groups working to improve the health of racial and ethnic minorities have long recognized the difficulty of attracting attention and acquiring the needed resources to tackle a problem without adequate data documenting the health problem. Healthy People 2000 has been an excellent example of the relationship between data and resources. When Healthy People 2000 objectives were released in January 1990, many health problems long recognized in the community were not included (e.g., low birth weight for Puerto Ricans). In some cases, data were released too late to be used in developing objectives. In other cases, the collected data were never analyzed. These new data were used during the 1995 midcourse review to develop new objectives, thus more than doubling the number of objectives for racial and ethnic minorities. Even so, important health problems recognized by the communities were still not addressed during the midcourse review. The reasons included: (1) the data may have never been collected from a national data system to document this health problem; (2) national data systems may have had insufficient numbers of the particular racial and ethnic group; (3) Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Islands are generally not included in national data systems; and (4) only racial and ethnic minority groups with a documented disparity compared to the total population were included in Healthy People 2000 objectives.

Several actions were taken to address this lack of data for existing Healthy People 2000 objectives. During the midcourse review, data from several national data systems were analyzed for the first time. In addition, several years of data from national databases (e.g., National Health Interview Survey, mortality files) were combined to provide estimates for relatively smaller racial and ethnic groups. In October 1997, the Secretary of DHHS issued an inclusion policy for racial and ethnic data in HHS data systems (see Appendix G). A first for the Federal government, this policy requires that data systems funded and maintained by HHS collect racial and ethnic data. In addition, this policy requires that the Federal standards for racial and ethnic data (OMB Directive No. 15 and its successor) be followed. In July 1998, the National Committee on Vital and Health Statistics (NCVHS), the external advisory group to the Secretary of HHS on health data and statistics, convened a public hearing on health data needs for Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Territories. NCVHS will make its recommendations in fall 1999 on ways to address the health data needs for these geographic areas. To support the proposed goal of eliminating disparities, the Healthy People 2010 objectives follow the Federal standards for racial and ethnic data. Data will be presented for racial and ethnic minorities, whether or not a disparity exists compared to the total population. Not only will this approach identify missing data for racial and ethnic minorities, but it will vastly improve access to the data by advocacy groups.

Despite this progress, data issues remain for racial and ethnic minorities. Relatively smaller groups such as American Indians, Alaska Natives, Native Hawaiians and other Pacific Islanders, and certain subgroups of Asian Americans and Hispanics will still be underrepresented by data systems designed to provide estimates for the total U.S. population. In addition, estimates based on data systems that do not routinely use self-identification to collect racial and ethnic data may significantly underestimate the burden of disease, disability, and death for certain racial and ethnic groups.

The change in Federal standards for racial and ethnic data will undoubtedly affect the monitoring of Healthy People 2010 objectives. Because of the usual time lags in collection and analysis of national data, baselines for Healthy People 2010 objectives will likely be derived from the mid-1990's, when OMB Directive No.15 was used. The revised standard for racial and ethnic data is to be implemented by Federal agencies by January 1, 2003, and will allow persons to identify with more than one race. Based on previous research, approximately 1 to 2 percent of the population is expected to initially report more than one race. Federal agency guidelines for the implementation of the new standards for racial and ethnic data, including comparison of data collected using the old and new standards, are now being developed by OMB.

A number of developmental objectives are included for Healthy People 2010. These objectives lack any national baseline data, but nevertheless are important topics to measure during the next decade. As plans for data collections begin, a concerted effort should be made to collect these data according to the new OMB standards.

To strengthen data systems used to provide baseline and monitoring data for Healthy People 2010, the Department has engaged in internal and external discussions with data users and data system managers regarding ways to present the data, set targets for the year 2010, and eliminate disparities. Five regional meetings were held throughout the country in fall 1998, and public comments were solicited. Specific recommendations on how to improve racial and ethnic data for Healthy People 2010 are listed under Appendix C.

Healthy People 2010, the Surgeon General, and NCHS recommend that baseline and monitoring data be presented for each people-specific objective for at least the five major racial and ethnic groups, and SES data be presented whenever possible, but not crossed by race and ethnicity due to small numbers. NCVHS recommended that baseline and monitoring data be presented for at least the five major racial and ethnic groups for all objectives, including those that focus on program or government activities. It further recommended that, if racial and ethnicity data are not available, the objective become developmental, and all developmental objectives be accompanied by plans to obtain data by race and ethnicity and income. At a minimum, NCVHS recommended that the Federal standard categories for racial and ethnic data be used. During the public comment period or regional meetings, several other organizations and individuals voiced support in presenting racial and ethnic data for all Healthy People 2010 objectives. The Latino Coalition for Healthy California (LCHC) recommended that Latino subgroup data be provided whenever possible. The Association of Asian/Pacific Community Health Organizations (AAPCHO) also recommended that data for Asian or Pacific Islander subgroups be shown. AAPCHO further recommended that the revised Federal standards for racial and ethnic data be used immediately, phasing in first with the top 10 States for Asian and Pacific Islanders.

Previous Reports on Racial and Ethnic Data

In an effort to identify high priority racial and ethnic data issues for this report, HHS Data Council's Working Group on Racial and Ethnic Data reviewed relevant recommendations and strategies developed by previous internal and external advisory groups. This review was contained in a draft report shared with the HHS Data Council.

The Working Group found considerable overlap in the racial and ethnic data recommendations, which addressed the full spectrum of activities and resources needed to support a comprehensive minority health data development program.

Steps have been taken to implement a number of the recommendations made in previous reports. For example, to address problems in racial and ethnic misclassification, NCHS and several States have developed files linking infant births and deaths. Data based on this file are routinely included in the annual Health U.S. reports. In addition, the analysis and dissemination of data for the black and Hispanic populations have been expanded.

While notable progress has been made, research is still needed on such methodological issues as the collection, analysis, and dissemination of data on the Asian Americans or Pacific Islanders and American Indians or Alaska Natives populations, as well as on subgroups within broader racial and ethnic populations.

Recommendations that the Working Group identified as of Ongoing and continuous need or as Short term were reviewed first for potential implementation by the Department. Recommendations pertaining to the analysis and dissemination of extant data can be implemented in the near future, because they often require little additional new resources. The implementation of recommendations related to oversampling specific populations and to conducting targeted surveys appears less feasible in the short term due to associated costs.

Development of racial and ethnic data in the Department needs to take into account emerging priorities, such as the need to improve racial and ethnic data for Medicaid and Medicare enrollees, as well as the need to access managed care encounter data.

Although many resources have been devoted to improving the Department's racial and ethnic data, data development activities in the Department and within agencies still suffer from fragmentation and lack of coordination. As a result, the impact and success of the many efforts to improve the availability and accessibility of data for minority populations has not been optimal. While no previous recommendation addressed the need for an annual report to the Secretary, the HHS Data Council, or other appropriate entity, such a report would serve as continuous documentation of the Department's racial and ethnic data development activities. Moreover, requiring such a report would further encourage agencies to enhance their efforts to improve the collection, analysis, and dissemination of racial and ethnic data. While many resources have been devoted to making improvements in racial and ethnic data, much of the progress remains undocumented or unnoticed. In the future, the Department's progress in improving the data available for minority populations should be documented and disseminated.

Although the Working Group did not further prioritize the recommendations, immediate consideration should be given to developing the appropriate infrastructure necessary to guide and monitor activities related to the development of racial and ethnic data, by the Department and those agencies with a major responsibility for the collection, analysis, and/or dissemination of data.

Finally, although most of the recommendations reviewed were written to address data activities within the public health agencies, most notably NCHS, they have broader applicability due to the Department's reorganization, and its new emphasis on integrated data systems. Following is a brief description of the approach that was used to review select reports on racial and ethnic data.

Approach

Reports from the following groups were reviewed:

• Secretary's Task Force on Black and Minority Health
• PHS Task Force on Minority Health Data
• Surgeon General's Hispanic/Latino Health Initiative
• National Asian Pacific American Families Against Substance Abuse, Inc.

The short timeframe within which the Working Group operated did not permit a one-by-one review of recommendations from other reports, such as the American Indian Health Care

Association's report to NCHS on Enhancing Health Statistics for American Indian and Alaska Native Communities: An Agenda for Action, Healthy People 2000 Progress Review for Black Americans, and that of the National Health Summit of Asian American and Pacific Islander Health Organizational Leaders. However, a review performed by the previous PHS Working Group on Minority Data (a subcommittee of the PHS Public Health Data Policy Coordinating Committee) of the Hispanic data recommendations found that most of the Hispanic-specific recommendations were applicable to other racial and ethnic minorities.

In its initial review, the Working Group determined that the recommendations tended to fall within a number of recurrent categories::

1. Funding
2. Infrastructure
3. Policy and Legislation
4. Cooperative Efforts Among Federal, State, Local Agencies, Private Groups, Researchers, and Others
5. OMB/Identifiers/Subgroups
6. Evaluation/Methodology/Quality
7. Oversampling or Target Surveys
8. Content and Relevance
9. Analysis, Publication, and Dissemination
10. Training and Technical Assistance
11. Representation

The Working Group assigned each recommendation to one or more of these 11 categories. . Some recommendations covered a number of issues and were assigned to more than one of the categories. Additionally, a few recommendations were assigned to a 12th category, labeled Other. While the titles of these categories are for the most part self-defining, additional commentary on each is given in the section below, Discussion of Data Issue Categories.

In its initial review, the Working Group was able to determine that a number of the recommendations had already been addressed by the Department. Other recommendations would require varying levels of resources for implementation.

Recommendations were identified by the Working Group as requiring continuous effort, ongoing and continuous need, short-term need, or long-term need. Following is a brief description of these categories:

1. Continuous effort. HHS has started to address this recommendation, and the effort has become an integral part of an agency's or other operational unit's mission and procedures.

2. Ongoing and continuous need. HHS has begun to address this recommendation, but the level of effort needs to be increased.

3. Short term. This recommendation could be implemented in the near future with few additional resources.

4. Long term. This recommendation requires significant resources to implement or would require significant changes in legislation, policy, methodology, or other operations.

The Working Group has occasionally added cross-references and/or other comments. The recommendations assigned to the category Other were not characterized according to level of effort.

Data Issue Categories

While the reports reviewed by the Working Group did not present their recommendations in the data issue categories described below, these categories reflect the range of issues covered by the recommendations reviewed. Moreover, these categories address the full spectrum of activities and resources needed to support a comprehensive racial and ethnic data development program in the Department. Following is a summary of the specific recommendations from previous reports on racial and ethnic data that can be found in Appendix D.

1. Funding. While the implementation of almost all of the recommendations reviewed by the Working Group may require increased resources (personpower or funds), recommendations were assigned to this category because: (1) they specified the need for funding, or (2) a significant outlay or infusion of new monies and/or staff would be needed for implementation. A follow-up summary of the specific recommendations in previous reports on racial/ethnic data can be found in Appendix D.

2. Infrastructure. Recommendations were assigned to this category because they addressed the need for increased staff resources devoted to racial and ethnic data development activities. In some cases, the objectives called for the establishment of new organizational entities. For example, one of the recommendations in this section called for the establishment of a unit at NCHS devoted to minority health data, while another objective recommended establishment of a Minority Health Data Advisory Committee staffed by representatives from all appropriate HHS

Operational Divisions.

Some of the objectives in this section address the roles and responsibilities of the Office of Minority Health (OMH/OPHS). In this regard, the Working Group noted that, over the years, OMH/OPHS has noticeably strengthened its role of providing leadership and policy coordination for activities related to the collection, analysis, and dissemination of minority health data across all the public health agencies, but that increased staffing concerns are the major impediment to enhancing efforts.

3. Policy and Legislation. Recommendations were assigned to this category because they address the need for compliance with existing laws and policies, such as the OMB standards for racial and ethnic data, or because they involve the need to establish or modify legislation or HHS policies, such as those related to issues of confidentiality and privacy. However, a review of the Office of the General Council may be needed to determine whether the implementation of some of the specific recommendations in this section: (1) runs afoul of existing laws or appears to be illegal; (2) requires changes in existing legislation to be appropriately stated as Departmental policy; or (3) falls outside the authority of the Department's mission.

4. Cooperative Efforts Among Federal, State, and Local Agencies, Private Entities, Researchers, and Others. While the recommendations in this section are aimed at improving racial and ethnic data or making them more accessible, these recommendations specifically address the need for various collaborative efforts and relationships among Federal, State, and local agencies, private entities, and researchers. The recommendations embody the concept of shared responsibilities among the entities cited or reflect the understanding that the Federal Government should either take leadership or serve as a facilitator for the required action(s).

As written, none of these recommendations can be accomplished without the full participation of each entity named. Some rely, either in part or entirely, on the resources of entities outside of HHS, such as the Bureau of the Census. In this connection, HHS routinely works with the Bureau of the Census to help define the content of the decennial census and, in the past, has suggested the inclusion of various items that would help enhance the health data available for minority populations (e.g., disability status in 1990).

NCHS staff and others have worked to encourage the Bureau of the Census to develop national post-census population estimates for the Hispanic population, as well as for the Asian Americans or Pacific Islanders and the American Indians or Alaska Natives populations. The Bureau of the Census makes these estimates available on an annual basis. The availability of the estimates to serve as denominators for health data collected by NCHS has immensely improved NCHS's ability to provide data for broad racial and ethnic categories in intercensal years. However, the Bureau of the Census faces serious methodological challenges to developing such estimates for racial and ethnic subpopulations. The challenges associated with developing such methodologies at the State level or providing stratification by social and economic characteristics are even more formidable.

5. OMB/Identifiers/Subgroups. Almost all of the recommendations in this section represent various expressions of: (1) the need for Departmental data systems to collect and publish health statistics for the minimum racial and ethnic categories specified in the OMB standards for racial and ethnic data; and (2) the need for Departmental data systems to collect and publish health statistics for subcategories within the broad population groups specified in the OMB standards for racial and ethnic data. Some of the recommendations prescribe the methodology for achieving these ends (e.g., increase the sample size of planned surveys, conduct targeted population surveys), while some require further research as to their feasibility in specific applications or require major funding for their achievement. The implementation of these recommendations in data collection efforts based on administrative records presents a number of methodological considerations and, in some instances, may not be feasible or may produce data of a highly questionable quality.

6. Evaluation/Methodology/Quality. The recommendations in this section address the need to improve or develop new methodologies to: (1) enhance the ability of data systems to collect information on the race and ethnicity of respondents in accordance with the Federal standards for racial and ethnic data; (2) enhance the ability of data systems to collect information on subgroups within the broad racial and ethnic categories delineated in Federal standards for racial and ethnic data; and (3) enhance the quality of the data collected. Therefore, the aims of these recommendations overlap, to a large extent, the aims of the recommendations in the Category 5,

above.

Efforts to improve the quality of collected data are carried out routinely in the development and implementation of HHS data systems. However, much more effort is needed to develop methodologies to enhance the ability of data systems to collect information on the Hispanic, Asian American or Pacific Islanders, and American Indian or Alaska Native populations, and other subgroups within the broad racial and ethnic categories delineated by OMB. Increased effort is also needed to develop methodologies to enhance the availability of data for subnational geographic areas. Some of the same methodological approaches are identified in the next category, Oversampling or Target Surveys. Although some research has been conducted, additional research is needed to develop and evaluate these methodologies, and implementation will require additional funding and staff. In the meantime, the findings from previous research related to these efforts, especially in relation to data development for subnational geographic areas, should be reviewed and published, so as to serve as the basis for continued research efforts.

7. Oversampling or Target Surveys. All of the objectives in this section address the need to oversample minority populations in national surveys or the need to conduct targeted surveys as a means for improving the availability of statistically reliable health data for racial and ethnic populations. While the black population is routinely oversampled in national surveys conducted by NCHS and others, funding appears to be the major barrier to oversampling the Hispanic population in these surveys. Research conducted thus far suggests that oversampling in national surveys may not be a statistically useful approach for the Asian Americans or Pacific Islanders and American Indians or Alaska Natives populations. This is because existing primary sampling units may not adequately cover these populations which tend to be more concentrated in some areas than others, and also because of the logistical problems and high costs involved.

8. Content and Relevance. The recommendations in this category are aimed at improving the content of the data available for minority populations or making such data more accessible. These recommendations recognize that while most of what we know about the health status of minority populations is currently based on data obtained from the Vital Statistics System, other health information, such as morbidity, disability, chronic disease, and acute illness, is equally important in assessing health status. The need for data on socioeconomic status and health resources (e.g., personpower, services, insurance) has been particularly singled out. Accordingly, a number of the recommendations in this section are aimed at expanding the type of data collected, while others address increasing the amount of data analysis conducted and published on minority populations. The recommendations in this section are closely related to those in the Evaluation/Methodology/ Quality category. The recommendations are also closely tied to those in the Oversampling and Target Surveys category, because the current sample size of national surveys is considered to be a major obstacle to expanding analysis and publication of data on smaller minority populations, even if the necessary variables are included in the data system.

9. Analysis, Publication, and Dissemination. Recommendations in this category are related to and overlap recommendations regarding content and relevance. However, the recommendations in this section prescribe, for the most part, approaches to making the needed data more widely available and/or accessible. In some cases, these recommendations address approaches for increasing the availability of and access to data that have been compiled and analyzed by various HHS staff. In other cases, these recommendations suggest approaches for increasing the availability of, and access to, data that are collected, but not compiled and analyzed, due to limitations and staff resources. Taken together, these recommendations recognize the untapped opportunities for expanding the availability of information on the health of racial and ethnic minority populations based on data that are currently being collected (extant data). Over the years, the amount of data collected on the health of racial and ethnic minority populations have expanded, and these data have become more widely available and accessible. Enhancements in technology, personal computers, CD-ROMs, and the Internet, and the Department's willingness to use various other media provide tremendous opportunities for achieving the goals of increased dissemination.

10. Training and Technical Assistance. The recommendations in this category recognize the need to expand the pool of researchers interested in minority health issues and, more specifically, the need to expand this pool to include researchers who are themselves members of racial and ethnic minorities. These recommendations are based on the understanding that researchers from racial and ethnic minority populations would lend a culturally sensitive perspective to the development of data systems and to the analysis of data on the particular populations of interest. While no specific mechanisms for achieving these recommendations are provided, the NCHS Minority Grants Program has undertaken several activities designed to achieve those ends. Other approaches, such as the use of authorities under the Visiting Scientist Program and the Intergovernmental Personnel Act, could be used to accomplish these goals. Although the four recommendations in this section were all taken from the 1993 Surgeon General's National Hispanic/Latino Health Initiative, their intent should be expanded to other racial minority populations as well. Moreover, it appears reasonable to assume that the achievement of the recommendations in this section would serve to augment the pool of individuals available to serve on various committees, advisory groups, and grant review panels.

11. Representation. Recommendations in this category are closely related to those in the Training and Technical Assistance category. Accordingly, these recommendations are based on the understanding that racial and ethnic minority researchers and other professionals could: (1) bring a much needed culturally sensitive perspective to the development of data systems and to the analysis of data on the particular populations of interest; and (2) help to shape the more over-reaching data development policy decisions affecting the availability of health data on racial and ethnic minority populations. As mentioned previously, the intent of these recommendations should be expanded to other racial minority populations.

12. Other Issues. The objectives of the recommendations in this category may be addressed by recommendations in other categories. However, the recommendations in this category were not considered by the Working Group at the time of its review.

6. Use of Racial and Ethnic Data

The use of epidemiological data and other statistical data often involves gathering research and using it to help justify specific actions. Data help to frame an issue, providing evidence for subsequent actions or planning. Whether utilized by the public or private sectors, data can be used to plan programs, estimate burden of disease, profile patient characteristics, determine policies, assess outcomes, plan interventions, conduct health practices, perform evaluations, determine preferences, define clinical characteristics, provide investigational evidence, formulate and justify budgets, and allocate funds. Although data can be used to provide direct justification, this use is restricted by the current availability of complete, accurate, reliable, and relevant data.

Many present data systems are the best possible to date, yet many are complicated by data collection perplexities, sampling issues, and methodological complexities that severely limit their use for specific applications. For instance, some hospitals collect racial and/or ethnic data, while others do not. Thus, information about all populations is not available. Another example is the national data collection on a specific topic, such as cancer. Currently, SEER, one of the best cancer-related data systems in the country, is used to oversample racial and ethnic minorities and continues to make strides in reporting cancer data and statistics for racial and ethnic minorities. It is, however, plagued with sampling issues related to population representation and small sample sizes. The bottom line is that most data systems are riddled with complications that are not readily remedied. Therefore, it is important to not be overly critical of existing systems but, as improvements are made, to stay mindful of the limitations and subsequent uses of the data.

Data are best used with their intended purposes defined by the design parameters. To use data effectively, it is important to read the documentation or consult with the source agency to understand the purposes of the data, as well as the data preparation procedures. Before using data, it is important to know the parameters of the data set, such as population characteristics, intent, sample size, variable labels, delayed reporting, and numerators. This is especially important when using racial and ethnic data, because of differing practices in labeling and collecting the information, as well as variations in sample size. By properly discerning such details, data can be used more effectively, data gaps can be identified, limitations can be clarified, criticisms can be reduced, and misinformations can be decreased. When used appropriately with design limitations acknowledged, data can sometimes be used to provide direct evidence of disease and treatment patterns, detect changes in the progression or course of a disease or treatment, and set priorities for programs.

There appears to be some concern among the general public that data on race and ethnicity will be misused. The use of these data must be made clear to the public; safeguards against misuse must be outlined clearly to gain the cooperation of individuals who will provide the data.

Data as Source of Direct Evidence

Data can provide direct information on many factors, such as the incidence, prevalence, and survival rates of various diseases, the examination of results of diseases, screening patterns and rates, population characteristics, analysis of patterns of health care utilization, food intake, risk factors, mortality, health care needs assessments, patterns of care and health behavior, pathology, treatment methodology, costs, quality of life, genetics, epidemiology, etiology, and database linkages. Data can provide parameters pertinent to the estimation of the outcomes of a disease or the effect of an intervention. Examples include a decreased benefit (i.e., survival of an acute myocardial infarction), an increased probability of a particular risk (i.e., arrhythmia), or an increase in a symptom (i.e., prolonged chest pain).

If direct information is not available, related data are compiled to provide indirect evidence. These assumptions are often effective in describing a condition when direct evidence is not available. However, caution should be used when making resolute statements or program decisions based on such figures. In addition, data users should always be mindful that results are influenced and limited by design. Scientists interpret results of a study to search for "proof" in the form of statistically significant results. These results can only be as effective as the design and the cultural competence of the investigation. This is an important prerequisite to using and interpreting racial and ethnic data as direct evidence. There are cultural, language, and literacy differences influencing the responses that create data. Consequently, the outcomes may differ from the original intent. Definition of health outcomes must be precise and meaningful to those who will be affected by them. In addition, if the survey questions are not meaningful or culturally appropriate, response patterns may differ from the intended outcome. Thus, the design may adversely affect the data results.

Data Monitoring and Surveillance to Depict Patterns

Data monitoring and surveillance ascertains trends reflecting patterns of disease or treatment and characterizing an overall perspective that a single data point cannot describe. This kind of data monitoring can assist in detecting changes in the progression or course of a disease or treatment, which could possibly cause a change in treatment which, in turn, could change the treatment outcomes. A collective data portrayal provides stronger evidence than any single data point.

Although such information generates important contributions to understanding diseases and treatment patterns, it generally is not available for most racial and ethnic groups. In most cases, it is limited to white and black populations, mostly due to the historical lack of racial and ethnic qualifiers in previous data collection efforts. In the future, data collection efforts and inclusion may provide this valuable information for additional groups. Until then, the lack of information should not exclude these groups from funding and program priorities at the local, State, or Federal levels.

Data for Assistance in Assigning Priorities

In an age of limited resources, data are often used to assign priority when planning for programs and funding activities. Often this means that the resources used for one activity will not be available for subsequent activities. It follows then that, if the resources spent on one program could have yielded greater benefit if spent on another program, those resources have not been used in the most effective, efficient manner. These decisions are often persuaded by what information is available and dissuaded when direct evidence is not available for all the components of the decisionmaking process. As a result, racial and ethnic groups that do not have such information may be overlooked as a priority.

When allocating limited resources, the customary practice is to give priority to interventions that are the most efficient in that they yield the greatest improvement in terms of the stated objective for the available resources. Efficiency of allocation determines that resources should be allocated to interventions according to their "bang for the buck," or their effectiveness per unit cost when compared with that of alternate interventions. Funds are said to be allocated efficiently if the intervention chosen delivers the maximum total effectiveness possible given available resources. However, it is impossible to make such determinations without all of the evidence. Frequently, these decisions are made with the limited information, and subsequently can disregard a priority that does not have the evidence of proof (in the form of data). This practice often results in specific population concerns not being addressed simply because the relevant data are not available.

In the management of programs with limited resources and budget cuts, funding resources are often reduced in areas with no data or restricted data. In most cases, this becomes a precursor to failure, as resources are not allocated efficiently. The target population, in particular certain racial and ethnic groups, is often wrongly blamed for the inadequacy. Needed data are not secured, and programs cease to be planned or allocated for in the budget process. In the end, populations with missing data cannot be justified as a priority.

Examples of Data Use

American Indians or Alaska Natives tribal entities have the option of contracting or compacting with IHS to operate their own health programs. About 40 percent of the IHS budget is currently under tribal control. In tribal health programs that need data on demographics, morbidity, health care utilization and expenses, health risk behaviors, and others, tribal-specific data are ideal, but county-level Indian data can be used as a proxy. Such data are used for health program planning, budget formulation and justification, program advocacy to governments and other funding sources, performance measurement and evaluation, health status assessment, and research.

Minority community-based organizations use demographic, morbidity, health care utilization and expenses, and health risk behaviors data much in the same way. A substantial portion of this information is unavailable for minorities in general, and for specific subcategory populations,

such as Mexican, Puerto Rican, Cuban, and South American. There are, however, a few Federal and State data systems that collect information by racial and ethnic groups and subcategories. These data include but are not limited to: (1) census material, including the Public Use Microdata Sample (PUMS); (2) vital statistics from selected States that are available at the national level; (3) NHIS; and (4) SEER data from NCI; and NPCR data from CDC. Other data systems may collect sufficient minority and subcategory data at the aggregate level, bu the data are not always analyzed or disseminated by the agencies.

No standard practice exists for data collection employing specific racial or ethnic identifiers. For example, the term "Hispanic" is not associated with a national origin, which makes it difficult to collect data from non-U.S.-born Hispanics who are unfamiliar with the term. Furthermore, because Hispanic is an ethnic classification, the related data may be masked by the racial category, and the particular needs of Hispanics may go undetected. Many community-based organizations are frustrated with the need to have data to apply for funding and develop programs, when little or no data are available. This lack of data probably affects the shortage of Federal and State programs targeted specifically toward minorities. Private industry is also a consumer of racial and ethnic data. They use demographic data to target marketing and to determine which products to sell to which consumers. Certain segments of private industry have the capacity to conduct studies providing evidence of product usage broken down by specific groups and populations. Such data often provide the evidence for management and marketing plans.

7. HHS Plan for Collection and Use of Racial and Ethnic Data

Preamble

To characterize subpopulations of any kind, at least two criteria must be met. First, the collection of information that allows subjects to be categorized along the dimension of interest is needed. Second, information must be obtained from a large enough number of individuals so that reliable descriptions can be obtained. In the case of race and ethnicity, the Federal standards for racial and ethnic data provide guidance for satisfying the first criterion. While these standards provide a useful starting point in that they address the minimum amount of information that should be obtained thereby enhancing the consistency with which data are collected, the nature of the information collected is matched to the data collection objectives. This may entail the collection of information that allows for the use of more detailed racial and ethnic grouping, or the collection of information on other characteristics, such as language and immigrant status, that are closely associated with race and ethnicity. Current methods of collecting data on racial and ethnic groups might benefit from expanding beyond the minimum categories outlined in the Federal standards for racial and ethnic data, but this needs to be evaluated on an individual case basis.

Special attention needs to be devoted to a data collection system to ensure that the group being studied can be properly analyzed. For example, even if each individual in a data collection system can be characterized along the dimension of interest, the group cannot be characterized unless information is available on a sufficient number of individuals. For data collection systems that obtain complete population counts, such as the census or vital statistics, the actual population size or the number of events will determine if it will be possible to characterize a given subgroup. The small size of some subgroups will make it impossible to characterize them. In this case, the only alternative is to combine, if possible, similar groups, or groups over time, to obtain a subgroup of sufficient size.

More significant problems usually arise when data are obtained from samples. In this case, the absolute size of the sample and its design will be the determining factors. When simple random samples are used, each population subgroup will be represented in proportion to its size in the population. To obtain adequate samples for the groups of interest, large enough samples must be selected so that each group is adequately represented, or sampling strategies must be used that result in some groups being represented in the sample (at a higher rate than their actual representation in the population). There are three strategies for doing this, each of which can be used individually or in combination. These are: (1) oversampling in areas already in the sampling frame known to have a high concentration of the subgroup of interest; (2) screening sampling units in the sampling frame to obtain a target sample for each group; and (3) enhancing samples with known populations from other existing sampling frames having the characteristics of interest. The first strategy requires accurate information on the location of the population of interest; the second usually entails considerable costs; and limited options are usually for pursuing the third. No single approach will satisfy all data needs, and each will have significant drawbacks. The creative combination of approaches will be needed to take full advantage of the opportunities each offers, while minimizing limitations.

The usual practice in large surveys is to do oversampling in areas of high subpopulation concentrations in combination with screening. The strength of this approach is that screening sampling units coupled with differential sampling rates is an effective way to obtain target subgroup samples. However, the weakness is that it is an inefficient approach. Efficiency can be improved by using external sources of information, usually the census, to identify areas where populations of interest are likely to be found. This approach is most efficient when the data collection period falls close to the census. As time passes and population distributions change, an outdated census no longer provides a good guide for sample design. This approach also targets the sample in areas of high subpopulation concentration and, therefore, is not as useful for populations that do not cluster geographically. In addition, even for subgroups that demonstrate clustering, if this geographic clustering is related to other population characteristics, such as socioeconomic status, the resulting sample will be inefficient in that subgroup members with that characteristic will be over-represented, whereas subgroup members who do not live in geographic clusters and who have other characteristics will be under-represented.

If good external information on population distribution is made available, sampling efficiencies can be achieved and data collection costs minimized. The American Community Study (ACS) has potential for providing such information. If issues related to the restrictions imposed by Title 13 can be resolved, the ACS could be used to improve the design of the basic surveys and to augment samples with select populations of interest. Alternatively, sampling frames that identify subpopulations of interest can be used alone or in conjunction with area samples. The supply of such frames is, however, somewhat limited. Frames covering defined populations and having the essential information on race and ethnicity are needed. Most of these frames will be based on administrative data. For example, because vital records contain information on race, samples can be drawn from this frame in such a way that subgroups of interest are adequately represented. If a sample of school age children is desired, school rosters might provide an adequate sampling frame. These administrative lists are subject to error, and the use of such frames needs to be evaluated according to the objectives of the data collection. The use of sampling frames from administrative data will not necessarily represent larger populations because they are dependent on some action by individuals, e.g., having a birth, enrolling in school, or getting a divorce.

The costs of screening are highest for in-person household surveys. Telephone surveys are much less expensive and are an attractive option when extensive screening is needed. Telephone interviewing has notable limitations, however. Most serious biases will be introduced for subpopulations having low levels of phone coverage. In addition, this interviewing mode places constraints on the length of the interview, on the nature of the information that can be collected, and on the use of respondent aids. As with administrative sampling frames, telephone methodologies can be used alone or in conjunction with more traditional approaches (in this case, in-person interviews). While dual frame approaches are not new, they have not been used extensively, and their potential for the collection of data on racial and ethnic groups should be

evaluated. Another complicating factor is the proliferation of new telephone technologies that need to be accounted for.

Strategies to enhance the collection of data on racial/ethnic groups are not only affected by residential clustering of the groups of interest at the neighborhood level, but at the regional level as well. Some groups are highly clustered in certain regions of the country, and this poses challenges for the sample design. If the aim is to make national estimates for subgroups, it is necessary to sample and screen in areas of high and low concentration, a method which is both inefficient and costly. An alternative is to focus on regional, as opposed to national, estimates for some groups in certain data collection systems. For example, in the Hispanic Health and Nutrition Examination Survey, regional (rather than national) estimates for three subgroups were obtained. This technique resulted in a major reduction in survey costs. While the regional estimates were not equivalent to national estimates, the samples were representative of a substantial majority of each subgroup, given the level of regional clustering. Acquiring a basic national sample that is augmented by regional samples of select subpopulations is one way to obtain some information on a racial group at the national level, while providing more detailed information on subpopulations within the major group as defined by socio-demographic characteristics (e.g., age country, origin).

The need for data on subpopulations of interest, whether defined by race, ethnicity, geography, or some other socio-demographic characteristic, requires that sample designs become more creative and complex. To assure that adequate information is available on all subpopulations of interest, those areas where needed information is not available are first identified, and then feasible options are developed for obtaining such information. While new data collection systems are always an option, the feasibility of expanding existing systems should first be evaluated. In evaluating options for expansion, all possible sample design strategies should be considered. There are three steps in approaching these tasks: (1) identify data gaps (content by racial and ethnic group); or (2) identify the data systems that provide those data, and then (3) develop data system-specific approaches to filling the identified gaps. Given the large number of gaps, most HHS data systems will be involved. As a result, the gaps will be prioritized and the systems that produce the most important information will be addressed. Alternatively, a few of the Department's most central data systems can be identified and strategies developed to expand data collection so that estimates can be made for a set of target racial and ethnic groups on a continual or periodic basis.

Recommendations

In this section, the steps of the HHS long-term strategy for improving racial and ethnic data are detailed. These recommendations, for the most part, are in response to specific gaps or questions raised by 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 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 recommendations are grouped into four categories: (1) collection, (2) analysis and interpretation, (3) dissemination and use, and (4) research and maintenance.

1. Data Collection

1. HHS should implement a multi-approach strategy based on documented needs and the results from methodological research for developing data on racial and ethnic minority populations and subpopulations, including: (1) improving vital statistics, (2) oversampling in national surveys where feasible, (3) conducting follow-up and dual frame type sampling approaches for special surveys, and (4) sponsoring targeted studies for developing data on subpopulations where oversampling is not feasible or cost effective.


2. HHS should support the development of a system (or systems) of data collection to supplement ongoing national collection efforts (i.e., the major health surveys such as NHIS) with smaller scale surveys and studies to provide data for racial and ethnic minority groups and subgroups.

Due to their small size or geographic concentration, certain racial and ethnic minority subgroups cannot be readily addressed using a national sampling and surveillance system. The results cannot be used to represent the national population for the racial and ethnic group but do yield useful information for the targeted group. For most smaller minority subpopulations, this approach should be the primary method of data development. Such studies should employ measurement approaches that will make them comparable to national estimates for the general population.

3. HHS should develop a 10-20 year strategic plan for the national surveys specifying a schedule that indicates the periodic targeting of racial and ethnic groups.

Each year for each survey, a proposed group would be indicated. For example, the 2005 NHIS might target American Indians residing in Washington State. This might involve developing a special sample of Indians using different primary sampling units than those used in the national survey. The special sample could be conducted either at the same time or following the national survey. The specifics would vary depending upon the national survey and the group being targeted. The pairing of groups and surveys would be based on meeting a specific information need. For example, if NHIS has a planned smoking supplement in 2005, and Washington State Indians have a smoking issue that they are interested in addressing and for which they need data, then this would be a logical pairing. The schedule and details of a particular targeted survey would need to be worked out in conjunction with the involved agencies and representatives of the racial and ethnic group. The schedule would need to be somewhat flexible to address emerging problems and hot issues. The proper location of the funding for these targeted surveys needs to be determined. One option is to include the funding in a special HHS budget item because these activities represent priorities of the Administration and the Secretary and are crosscutting in importance. The funding could be part of the applicable agency's budget to document its total activities on a recurring basis and to provide the agency direct control. This will be a major undertaking that will require the Department and the agencies to work together to develop a comprehensive and feasible plan.

4. Agencies should fill in the racial and ethnic data gaps for non-developmental objectives for Healthy People 2010. The initial focus of these efforts should be on racial and ethnic data gaps for non-developmental Healthy People 2010 objectives relating to the six health focus areas of the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health.

This will be a considerable effort and cannot be detailed in this report. One of the two proposed goals for the national disease prevention and health promotion goals and objectives for Healthy People 2010 is to eliminate health disparities. To help monitor progress, baseline and monitoring data for Healthy People 2010 objectives are to be presented by race and ethnicity. Although baseline data are available for the total population for non-developmental objectives, racial and ethnic data are not uniformly available.

5. 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 should 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. Strategic plans and funding to direct and coordinate research for collecting sufficiently large sample sizes for each racial and ethnic group in each State should be developed to provide information on those groups and subgroups. Agencies are encouraged to collect information by State on the percentage of persons in each racial and ethnic group (and subgroup, where available) without health insurance and without a primary source of care.

6. Sociocultural data (e.g., socioeconomic status, behavioral risk factors, occupation, language proficiency, and birthplace) should be collected and analyzed in order to understand the underlying causes of disparities.

Specific guidance or standards should be developed for the collection of sociocultural data to ensure consistency and comparability among different systems. Agencies are encouraged to code and key language of interviews. Additional surveys and research data concerning the relationship between health and living conditions, poverty, environmental and occupational exposures, access to health care, etc., are needed.

7. Culturally and linguistically appropriate interviewing techniques should be employed at all times when conducting surveys on racial and ethnic health issues. The local communities or representatives of the groups being studied should be consulted to learn about the relevant cultural factors and language requirements, as feasible.

For example, dependence on telephone interviews is not appropriate for minority communities with high rates of telephone non-coverage. Costs of a service contract for translation of questionnaires and survey instruments are minimal compared to the overall cost of the survey. To be most effective, it is important to have conceptual, rather than just literal, translations of materials. Ideally, the data collection instruments and interviewers should be culturally competent, and the issues studied should be relevant to the needs of the community.

8. As a matter of policy, HHS should advocate for the inclusion of, and require wherever possible, racial and ethnic data in administrative records for both the health and human services areas.

As an example of this commitment, HHS should ensure that a race and ethnic data item is included in the standard for the HIPAA enrollment/encounter transaction. It is critical that the Department demonstrates its commitment to improving racial and ethnic data by incorporating these data into the health care transaction data standards developed under the Act. This will require that the Department and its agencies make the case before the standard setting groups during the next year or two. The Department should also take steps to ensure that the racial and ethnic data collected under the standards are complete and accurate. Furthermore, HHS should use existing authorities to require the routine collection of racial and ethnic data for healthcare settings.

9. HHS should conduct national conferences to enhance coordination and improve data collection, analysis, and dissemination.

A conference should be devoted to determining how the Federal government and States can collaborate to eliminate racial and ethnic data gaps associated with Healthy People 2010 and the eliminating disparities initiative. Partnerships should also be promoted with States on achieving consistency on reporting by race and ethnic origin. The national conference can include NCHS, other parts of the CDC, the Commerce Department, the Department of Justice, the Environmental Protection Agency, and other Federal agencies. The goal of this conference is to reduce the burden of voluntary and mandatory reporting by the States and to improve the consistency of reporting of race and ethnic origin. Among the products of this conference should be guidelines for comparability and plans for providing, on a continual basis, technical assistance and resources to State and local agencies responsible for data collection.

10. Agencies should expand or establish new registries for certain chronic conditions targeted in the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health, including cancer (e.g., SEER or NPCR), diabetes, heart disease, and stroke. The quality of racial and ethnic data should be improved in existing registries.

The cost of developing and maintaining registries is very high, but their importance warrants the investment. Draft work group reports prepared for the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health identified several important racial and ethnic data gaps for cancer, diabetes, heart disease, and stroke. SEER and NPCR has provided a wealth of information on stage of diagnosis, use of health care, incidence, for cancer in racial and ethnic groups that would be extremely useful to have for diabetes, heart disease, and stroke. Further support should be offered to SEER's and NPCR's efforts to enable reporting for subgroups with small numbers.

11. 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, and as a result, expand existing or create new data collection systems to incorporate measures of discrimination in health care settings and to measure or monitor discrimination, as appropriate.

These efforts will require research and evaluation activities to determine how best to accomplish the goals. They need to be designed to be supportive of the Department's plan for the measures of discrimination initiative, which is still being developed. In addition to differences in health disparities due to socioeconomic status, studies indicate that African Americans receive strikingly different or poorer treatment for heart disease and other conditions compared to whites, even when incomes are similar and health insurance is equally available, e.g., Medicare or VA. In light of the new White House measures of the discrimination initiative, HHS is expected to devote attention to improving the measurement and tracking of discrimination in health services and treatment during the next 4 to 5 years. During FY 2000, a literature review on measures of discrimination in health care settings is being carried out. In addition, the Working Group on Racial and Ethnic Data will review HHS administrative data systems for their potential to develop measures of discrimination in health services and treatment. This information will help to inform a planned National Research Council Roundtable during its efforts to develop a research agenda and workplan that government agencies can implement to carry out needed research. For example, agencies should be encouraged to design and fund studies using available data on similarly insured populations from managed care systems, VA Hospitals, and Medicare data sets to determine the extent and degree of disparate preventive and diagnostic interventions and treatments for different racial and ethnic groups. Data are needed for Medicaid patients and non-Medicaid patients in managed care systems to determine and compare preventive and diagnostic interventions and treatments for different racial and ethnic groups.

12. HHS should develop a strategy for ensuring that future patient record systems do a better job of meeting public health as well as clinical data needs for all patients, but in particular for racial and ethnic minorities.

The accelerating pace with which electronic patient record systems are being developed and deployed presents an historic opportunity for HHS.

13. HHS should expand its health database for Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific territories, i.e., American Samoa, Commonwealth of the Northern Marianas, and Guam.

Data for these areas are currently limited in quantity and quality.

14. Agencies should support feasibility studies to collect geographically identifiable information and allow geocoding for national data systems.

HUD has successfully implemented a policy to collect geographically identifiable information to allow geocoding for all data systems and block grants. Geocoding allows linkage of files that 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. For example, during its review of the recently completed inventory of HHS data collection systems, the Working Group discovered that approximately 10 percent of reported data collection systems in the inventory did not collect racial and ethnic data. Because the data for most of the data systems that did not collect racial and ethnic data are provided by entities over whom the Department has limited jurisdiction, geocoding would allow some analyses to be conducted by race and ethnicity, by linking these data to demographic data from the Bureau of the Census.

15. SAMHSA should collect data to specifically identify racial and ethnic disparities in mental health and substance abuse epidemiology and services delivery.

Clearly, racial and ethnic differences in the epidemiology of mental health and substance abuse disorders exist, and clear racial and ethnic differences are evident in the delivery of mental health and substance abuse care to those populations. Furthermore, these disparities on service delivery impact other areas of health care that frequently comorbid with these conditions, such as myocardial infarction and diabetes.

16. NCHS should continue to pursue the Defined Population (DP) NHANES.

The proposal for a limited scope health and nutrition examination survey--DP NHANES conducted by NCHS--addresses the need for detailed study of the underlying factors in the development of chronic diseases such as diabetes, cardiovascular disease, and cancer for racial and ethnic minorities who are currently not included in sufficient numbers in NHANES. NHANES has proven to be of particular use in studying under-diagnosed conditions such as hypertension and diabetes and accurately measuring risk factors such as obesity. Potential uses of DP NHANES, which address previous recommendations, include: (1) updating the Puerto Rican data from the Hispanic Health and Nutrition Examination Survey, (2) providing data on the U.S.-Mexico border area, and (3) providing data on the Navajo Nation.

17. Agencies should study the impact of program interventions, i.e., what strategies work best to address disparities and discrimination.

The exposure to the intervention and measurement of intermediate outcomes related to the program needs to be tracked. Designing adequate and effective evaluation studies requires careful design work and considerable resources.

18. Agencies should collect data to assess the impact of changes in health care delivery systems on racial and ethnic minorities.

Designing adequate and effective evaluation studies requires careful design work and considerable resources.

19. Agencies should collect data on hard-to-find racial and ethnic groups.

Data are often lacking on such issues as quality of life, shelter, access to health care, and prevention services for racial and ethnic groups that are isolated, especially for the disenfranchised, the homeless (both rural and urban), farm and migrant workers and their children, prisoners, mental patients, and those in nursing homes.

20. To facilitate the collection of racial and ethnic data from the general public, HHS should study how best to communicate the need for such data to the public.

There appears to be some concern that data on race and ethnicity will be misused. The use of these data must be made clear to the public; safeguards against misuse must be outlined clearly to gain the cooperation of individuals who will provide the data.

2. Data Analysis and Interpretation

1. A. Agencies should support extramural and intramural analyses of existing data for and related to racial and ethnic groups.

To increase the numbers of minority researchers in public health, whenever possible, consideration should also be given to funding training programs for minority students and faculty in public health, demography, statistics, and epidemiology. The programs should include the formation of partnerships between minority institutions, researchers and/or students, and institutions that are expert in these subject areas.

2. Analysis should be culturally appropriate and sensitive.

To enhance the utility of the data, 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. For targeted studies, participation of the specific community being studied throughout all phases of the project (from design through publication of the results) should be required. Historically, systems for data collection, and the analysis and interpretation of results with respect to racial and ethnic groups have often lacked the unique insight and knowledge of the community. American Indian and Alaska Native tribal entities and minority community-based organizations (CBOs) should be consulted regarding any HHS and/or agency plans that involve improving the collection and use of data. To enhance data collection and interpretation of results, appropriate representatives of the community should be involved in planning surveys, selecting sites, and conducting analyses. Community representatives can assist in data collection plans to ensure representation of the various ethnic subgroups and can provide feedback to enhance the community's participation in important studies.

3. CDC/NCHS should study the effects of the new year 2000 standard population on death rates among all racial and ethnic groups.

Recent papers published on this issue have tended to focus on black and white differences. CDC is encouraged to study the effects of the new year 2000 standard population on mortality rates among Asians, Pacific Islanders, Hispanics, and American Indians or Alaska Natives populations. 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.

4. Analysts are encouraged to use additional information collected in their dataset on socioeconomic status, behavioral risk factors, and birthplace to assist in attempting to understand the factors underlying racial and ethnic disparities in health and health care access, which have been identified.

This is a complex area. Therefore, research should be supported by NIH and others to investigate causal processes through experimental, longitudinal, and multilevel studies designed for this purpose.

5. Agencies should bridge racial and ethnic data collected and published under the new OMB standards to that collected under the old standards in accordance with the OMB tabulation guidelines.

HHS should attempt to ensure a consistent application of the OMB tabulation guidelines among the agencies.

6. 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.

The linked file enables the calculation of much more accurate death rates for racial and ethnic groups.

7. Agencies should evaluate the impact of ICD-10 coding for mortality and morbidity by racial and ethnic group.

For example, the change from ICD-8A to ICD-9 affected trends in ischemic heart disease differently for the white and black populations. Evaluation of the impact of ICD-10 coding for mortality and morbidity should include analyses by racial and ethnic groups.

8. CDC/NCHS should calculate and disseminate age, race, and ethnicity-specific life tables, where feasible.

Life tables are currently not that detailed. This would permit the computation of years of potential life lost by those categories.

9. Whenever possible, agencies are encouraged to combine several years of data to achieve sufficient analytic sample sizes--this approach has been used successfully since the early 1980's with NHIS data. Agencies should be encouraged to ask a standard set of questions over several years so the data can be combined to an adequate sample size.

Without estimates for minority groups, HHS cannot set national goals and objectives or monitor progress toward those objectives. Because funding agencies depend upon national goals and objectives, not having the estimates means that the program dollars will not be made available. More emphasis should be placed on the understanding and interpretation of data cells with small numbers.

10. Analysts should take into account possible 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 collection and reporting of data by racial and ethnic groups. For example, private physicians, managed care organizations, public clinics, and local health departments may differ in the types of clients served, collection of racial and ethnic data, and reporting of clients to criminal justice, disease registries, and other administrative record systems. Also, individuals may report their race and ethnicity differently at different data collection sources, especially if they perceive that such reporting may improve or impair their chances of receiving the desired services.

3. Data Dissemination and Use

1. 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.

For example, on CDC WONDER, mortality data by race are available only for three groups: black, white, and other. CDC WONDER and other HHS data retrieval systems offer electronic access to health data from the Department to a wide range of users at the State and local levels. One of the main advantages is that health data can be manipulated by the user. Commensurate population data should be developed by the Census Bureau to calculate death rates for detailed racial and ethnic groups.

2. Agencies should disseminate relevant racial and ethnic findings back to the communities where the data were collected. This is important for studies and surveys that target specific communities.

A community or group that agrees to participate in a study understandably wants feedback from that study. The agency should make it clear to the community at the beginning of a studywhat data and information can be shared with the community and then ensure that this is carried out. Numerous recommendations from previous work groups and task forces regarding minority health data needs have emphasized the need to enhance efforts to disseminate research findings back to the communities from which the data were collected. Journal articles, conference proceedings, and agency publications are often cited as not being sufficient for the promotion of health education and facilitation of policy decisionmaking at the local level. Without making efforts to improve dissemination of research findings, the Department will find it increasingly difficult to maintain high participation rates.

3. HHS should publish periodic national reports on the health of racial and ethnic groups in comparison to all races and white populations.

There is a need for reports that cover all racial and ethnic groups, as well as reports that focus on a specific group. For example, the racial and ethnic specific data given on the website for the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health have never been published elsewhere and such basic information as life expectancy is not routinely published in widely-circulated reports.

4. Visibility and availability of the 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 sites that it can be accessed from.

The linked file enables the calculation of much more accurate rates for racial and ethnic groups.

5. Agencies should develop aggressive public use data release programs, with appropriate controls, to promote wider analysis of minority health data, including grant and contract support for data analysis and periodic data user conferences.

Agencies should increase the accessibility of data files by making them available on websites. Consideration should be given when developing grants and contracts to providing training support. For example, as part of the Jackson Heart Study, a study of cardiovascular disease in African Americans, an Undergraduate Training Center was established at Tougaloo College.

6. HHS should support regional racial and ethnic data centers to make these data more accessible to provide technical assistance in their use.

4. Data Research and Maintenance

1. Studies should be undertaken to determine the degree and scope of racial and ethnic misreporting on death certificates.

IHS should conduct follow-on studies to its original National Death Index (NDI) study to determine how the situation has changed. Similar studies need to be conducted for other racial and ethnic groups.

2. HHS should develop a training initiative (completing records, statistics, survey research, and epidemiology) to improve the completeness and reliability of racial and ethnic data.

For example, HHS should strengthen and expand cooperative efforts to train personnel (e.g., registrars, funeral directors, and hospital personnel) to complete vital statistics and administrative records accurately, particularly with regard to racial and ethnic identifying items. It is also desirable to support physician training in the medical certification of death. To complement the training, guidelines should be developed and broadly disseminated.

3. Agencies should conduct methodological 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).

There is also a need for a strategy for putting into practice the results of research on the primary collection of racial and ethnic data for administrative and medical records. One of the issues that could be addressed is the most appropriate method of collecting racial and ethnic data. Should the data be self-reported as opposed to recorded by an observer? The need to collect racial and ethnic data to monitor and enforce Title VI of the 1964 Civil Rights Act in health care settings has been repeatedly brought to the attention of the Department. Examples of this expressed interest during the past few years range from: (1) the Madison-Hughes vs. Shalala lawsuit; (2) OMB's comments during a review of HCFA's uniform billing forms; (3) comments expressed during public hearings held during the past year by the NCVHS on Medicaid Managed Care; (4) Congressional and White House interest in the findings published in the February 25, 1999, New England Journal of Medicine article on physician bias in clinical decisionmaking; and (5) publication of the book Health Care Divided by David Smith.

4. Agencies should study the feasibility of using telephone interviews to 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. This is especially important in Indian country where telephone coverage can be quite 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).

Data from in-person household interviews and administrative records should be collected for comparison and adjustment purposes. 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). CDC should request an increase in funding to study the feasibility of using telephone interviews to improve estimates from the NHIS for special populations including, but not limited to, racial and ethnic minorities. NHIS is a major source of baseline and monitoring data for Healthy People objectives. Assessment is therefore needed to determine whether the proposed approach of telephone interviews can be used to improve estimates from NHIS for racial and ethnic minorities. Consideration should be given to supplementing telephone surveys with personal or household interviews. Five percent of all households have no telephones. Data indicate that 13 percent of African American, 12 percent of Hispanic American, and 23 percent of Native American households are without telephones (compared to only 4 percent of white Americans and 2 percent of Asian Americans). This fact has serious implications for research related to measuring progress in health status for racial and ethnic minorities and would have adverse effects on the use of telephone surveys.

5. CDC/NCHS should pursue collaborative methodological 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 sample design and analysis purposes, but also for grant application writing by racial and ethnic groups. Throughout the Department, there will be a need for post-censal estimates on the population to help develop sampling frames, calculate rates, etc.

6. 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. They should evaluate the quality and completeness of racial and ethnic data obtained from surveys based on health records, and develop recommendations relating to more accurate, complete, and detailed information on racial and ethnic in health record-based surveys.

7. 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 the agency promises of privacy/confidentiality to respondents.

HHS should encourage and support legislative changes to allow such matching to occur with the appropriate safeguards.

8. CDC/NCHS should develop improved measures of income and wealth in NCHS surveys such as NHIS and NHANES. Special attention should be given to develop measures of wealth because racial and ethnic gaps for wealth are even greater than those for income.

These are important measures of economic status that are associated with health status.

9. Additional resources/funding should be provided for research on collecting and analyzing more detailed racial/ethnic subgroup information.

IHS, in collaboration with NCHS, should explore with appropriate States the potential for adding information on principal Indian tribe or Alaska village on birth and death certificates. There are important differences in health and socioeconomic status within a given racial and ethnic group.

10. Additional basic research in statistical methodology on how to include hard-to-reach populations, migrant workers, homeless persons, persons in institutions, persons "loosely" connected to households, etc., is needed.

These populations are usually not appropriately accounted for in national surveys, yet they have important health needs.

11. Research and demonstration projects should be funded in phases to allow the development of coalitions (e.g., planning grant, community building, and research and intervention.)

One-time funding makes it more difficult for coalitions to be formed in time to compete for the funding.

12. There is a need to focus not just on better sampling techniques but better questionnaire design as well.

In this regard, the NCHS Questionnaire Design Research Laboratory should perform some cognitive testing of batteries of items that could then be drawn upon by researchers. This would provide more standardization across studies.In addition, training is needed on the questionnaire design for the collection of racial and ethnic data because there continues to be confusion about the meaning and appropriate collection of the OMB standard categories.

References

Council of Economic Advisors. Changing America: indicators of social and economic well-being by race and Hispanic origin. Washington, DC: Council of Economic Advisors for the President's Initiative on Race, 1998 .

Gornick, Marian, et al. Effects of race and income on mortality and use of services among Medicare beneficiaries. N Engl J Med., 1996, Sept. Vol 335, No 11.

Haan MN, Kaplan GA. The contribution of socioeconomic position to minority health. Crosscutting Issues in Minority Health, Report of the Secretary's Task Force on Black and Minority Health (Vol II). Washington, DC: Department of Health and Human Services, 1985.

James, SA, Hartnett S, Kalsbeek WD. John Henryism and blood pressure differences among black men. J Beh Med 1983,6(3):259-78.

Krieger N, Rowley DL, Herman AA, Avery B, Phillips MT. Racism, sexism, and social class: implications for studies of health, disease, and well-being. Am J Prev Med 1993;9(6 Suppl):82-122.

La Veist TA. Why we should continue to study race...but do a better job: an essay on race, racism and health. Ethn Dis 1996;6(1-2):21-9.

Lantz PM, House JS, Lepkowski JM, Williams DR, Mero RP, Chen J. Socioeconomic factors, health behaviors, and mortality: results from a nationally representative prospective study of US adults. JAMA 1998;279(21):1703-8.

Liberatos P, Link BG, Kelsey JL. The measurement of social class in epidemiology. Epidemiol Rev 1988;10:87-121.

McGinnis JM, Foege WH. Actual causes of death in the United States. JAMA 1993;270(18):2207-12.

Montgomery LE, Carter-Pokras O. Health status by social class and/or minority status: implications for environmental equity research. Toxicol Ind Health 1993;9(5):729-73.

Office of Management and Budget. Directive no. 15: race and ethnic standards for federal statistics and administrative reporting. Statistical Policy Handbook. Washington, DC: Department of Commerce, Office of Federal Statistical Policy and Standards, 1978.

Osborne NG, Feit MD. The use of race in medical research. JAMA 1992;267(2): 275-9.

PHS Task Force on Minority Health Data. Improving minority health statistics: report of the PHS Task Force on Minority Health Data. Washington, DC: Department of Health and Human Services, Public Health Service, Office of Minority Health, 1992 .

Robert Wood Johnson Health Policy Research Program letter to Dr. David Satcher, Surgeon General and Assistant Secretary of Health. Comments on Healthy People 2010. December 15, 1998.

Schulman KA, Berlin JA, Harless W, et al. The effect of race and sex on physicians' recommendations for cardiac catheterization. N Engl J Med 1999;340(8):618-26.

Smith DB. Health Care Divided. University of Michigan Press. 1999.

Task Force on Black and Minority Health. Executive summary. Washington, DC: Department of Health and Human Services, 1985 Report of the Secretary's Task Force on Black and Minority Health. vol 1.

U. S. Congress. Joint resolution relating to the publication of economic and social statistics for Americans of Spanish origin or descent. Public Law 94-311. U.S. Government Printing Office, 1976.

U. S. Surgeon General's National Hispanic/Latino Health Initiatives. One Voice, one vision -- recommendations to the Surgeon General to improve Hispanic/Latino health. Washington, DC: Office of the Surgeon General, Department of Health and Human Services, 1993.

Weinick RM. Access to health care: sources and barriers, 1996. Rockville, MD: Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, 1997 MEPS research findings; no. 3.

Williams DR. Race in the health of America: problems, issues, and directions.

MMWR Morb Mort Wkly Rep 1993;42(RR-10):8-10.

Williams DR, Collins C. U.S. socioeconomic and racial differences in health: patterns and explanations. Ann Rev Sociol 1995;21:349-86.

Williams RB. Lower socioeconomic status and increased mortality: early childhood roots and the potential for successful interventions. JAMA 1998;279(21):1745-6.

Appendices

Appendix A Members of Work Groups

HHS DATA COUNCIL
WORKING GROUP ON RACIAL AND ETHNIC DATA

Olivia Carter-Pokras, Ph.D. (Cochair)
Director, Division of Policy and Data
Office of Minority Health
Rockville, MD

Anthony D'Angelo (Cochair)
Principal Statistician
Indian Health Service
Rockville, MD

Richard Bragg, Ph.D.
Social Science Research Analyst
Minority Health Services Research Coordinator
Health Care Financing Administration
Office of Strategic Planning
Baltimore, MD

Lester Cash
Office of the Assistant Secretary for Management and Budget
Washington, DC
 

Gwendolyn B. Clark
Public Health Analyst
Office of Minority Health
Health Resources and Services Administration
Rockville, MD

M. Lyvon Covington
Public Health Specialist
Office of Special Health Issues
Food and Drug Administration
Rockville, MD

Patricia M. Golden
Special Assistant to the Director
Office of Analysis and Epidemiology
National Center for Health Statistics
Centers for Disease Control and Prevention
Hyattsville, MD

Dale Hitchcock
Senior Policy Analyst
Division of Data Policy
Office of the Assistant Secretary for Planning and Evaluation
Department of Health and Human Services
Washington, DC

Morgan Jackson, MD, MPH
Director, Minority Health Program
Agency for Health Care Policy and Research
Rockville, MD

K. A. Jagannathan, Ph.D.
Program Analyst
Office of Planning, Research, and Evaluation
Administration for Children and Families
Washington, DC

Steven Melov
Director, Management, Information, and Analysis Division
Office for Civil Rights
Hubert H. Humphrey Building
Washington, DC

Bradford Perry
Office of Minority Health
Health Resources and Services Administration
Rockville, Maryland

Susan G. Queen. Ph.D.
Division of Information and Analysis
Health Resources and Services Administration
Rockville, Maryland

Gladys H. Reynolds, Ph.D.
Mathematical Statistician
Office of the Director
Centers for Disease Control and Prevention
Atlanta, GA

Beatrice Rouse, Ph.D.
Senior Epidemiologist
Office of Applied Studies
Substance Abuse and Mental Health Services Administration
Rockville, MD

James Scanlon
Senior Policy Analyst
Division of Data Policy
Office of the Assistant Secretary for Planning and Evaluation
Department of Health and Human Services
Washington, DC

Christopher T. Sempos, Ph.D.
Office of Research on Minority Health
National Institutes of Health
Bethesda, MD

Belinda Seto, Ph.D.
Senior Advisor to the Deputy Director
for Extramural Research
National Institutes of Health
Bethesda, MD

Amanda Utts
Writer/Editor
ASPE/PIC
Department of Health and Human Services
Washington, DC

Deborah L. Yatsko
Program Analyst
Administration for Native Americans
Washington, DC

Evelyn Yee
Researcher
Administration on Aging
Washington, DC

Jessie Washington
Equal Opportunities Specialist
Office for Civil Rights
Department of Health and Human Services
Washington, DC

OFFICE OF MINORITY HEALTH STAFF

Sheila Pack Merriweather
Public Health Analyst
Office of Minority Health
Rockville, MD

Annette M. Nieves
Program Analyst
Office of Minority Health
Rockville, MD

Violet R.H. Woo
Program Analyst
Office of Minority Health
Rockville, MD

HHS INITIATIVE TO ELIMINATE RACIAL AND ETHNIC DISPARITIES IN HEALTH DATA WORK GROUP

Jack Anderson (Co-chair)
Deputy Director, NCHS
Presidential Bldg.
Hyattsville, MD

Anthony D'Angelo (Co-chair)
Principal Statistician
Indian Health Service
Rockville, MD

Ross H. Arnett, III
Director, Center for Cost and Financing Studies Agency for Health Care Policy and Research
Rockville, MD

Olivia Carter-Pokras, Ph.D.
Director, Division of Policy and Data
Office of Minority Health
Rockwall II Bldg,
Rockville, MD

Vilma Cokkinides
Epidemiologist
Health Resources and Services Administration Bureau of Primary Health Care
Office of Data Evaluation Analysis and Research
Bethesda, MD

Deborah Guadalupe Durán, Ph.D.
Health Policy Analyst
Substance Abuse and Mental Health Services Administration
Administrator's Office for Policy and Program Coordination
Rockville, MD

Wayne Giles
NCCDPHP
Division of Adult and Community Health
Cardiovascular Health Branch
Centers for Disease Control and Prevention
Atlanta, GA

Miryam Granthom
Healthy People Consortium Coordinator
Office of Disease Prevention and Health Promotion
Department of Health and Human Services
Washington, DC

Morgan Jackson, MD, MPH
Director, Minority Health Program
Agency for Health Care Policy and Research
Rockville, MD

Ron Manderscheid, Ph.D.
Chief, Survey and Analysis Branch
Center for Mental Health Services
Substance Abuse and Mental Health Services Administration
Rockville, MD

Beatrice Rouse, Ph.D.
Senior Epidemiologist
Office of Applied Studies
Substance Abuse and Mental Health Services Administration
Rockville, MD

Barbara Wells (alternate)
Evaluation Director, Office of Data, Evaluation, Analysis and Research
Bureau of Primary Health Care
Health Resources and Services Administration
Bethesda, MD
bwells@hrsa.dhhs.gov

Appendix B Summary of Data Gaps and Recommendations Identified in Health Focus Area Work Group Reports

A review was conducted of health focus area reports prepared by the six work groups of the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health. The focus areas are (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 purpose of the review was to summarize existing data gaps and make recommendations for eliminating those gaps. A list of the reported gaps and the recommendations from each of the reports appears below. Where possible, similar topics are grouped together. The summary is divided into two sections: (1) cross-cutting gaps and recommendations; and (2) report-specific recommendations. In addition, several data gap sections which are not mentioned in the reports are listed.

For reference purposes, the new Federal standards for racial and ethnic data specify that data be reported 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.

Gaps and Recommendations

The following gaps and recommendations cross cut across all the reports.

Recommendation:

The Department should encourage and sponsor the analysis of existing data by outside researchers. All types of data--vital statistics, hospitalization, medical care, immunization, cancer screening, risk factor data, and incidence and prevalence--should be included.

Recommendations:

1. Considerable progress has been made in the publication of vital statistics data for the OMB minimum categories for data racial and ethnic groups. For example, Health U.S. contains population and selected mortality data for those groups. In addition, the website http://raceandhealth.hhs.gov/ contains data specifically targeted to the six focus areas. Because of the central role of vital statistics in public health, and because the availability and visibility of the current data can increase, this area deserves special attention. Although mentioning the existence of a gap, the six focus area reports did not mention the specific recommendations outlined here.

2. Examine the possibility of expanding the CDC WONDER system, especially the mortality data, to include data for: (1) the OMB minimum categories for race and ethnicity; (2) American Samoa, Guam, Puerto Rico, the U.S. Pacific territories, and the Virgin Islands; and (3) life expectancy.

3. Examine the possibility of increasing the visibility and availability of the data from the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health website by: (1) increasing the number of agency websites that it can be hotlinked from, such as the CDC, NCHS, and Healthy People 2000 websites; and (2) increasing the usefulness of data on the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health website by periodically publishing it as a government document and in the public health literature. For example, an apparent decline in childhood immunization rates between 1990 and 1995 would become more apparent if the data were published in a government document or as a journal article.

4. Health U.S. should consider including estimates of life expectancy, by sex, for the OMB standard/minimum groups.

• Gap: There are gaps in the analysis of currently available health data.
• Gap: There are gaps in the publication of vital statistics data.
• Gap: All reports mentioned the need for periodically updated data for ethnic subgroups, i.e., subgroups of the OMB specified racial/ethnic groups, at the national, State and local levels. From the existing data, it is clear that the larger racial and ethnic groupings can mask significant health disparities among racial and ethnic subgroups. The data gaps included all types of data, i.e. vital statistics, hospitalization, medical care, immunization, cancer screening, risk factor data, incidence and prevalence for each of the six focus areas (infant mortality, cancer, cardiovascular diseases, diabetes, HIV/AIDS, child and adult immunizations).

  Recommendations:

  1. The OMB directives specify a minimum level for presenting data by race and ethnicity. The guidelines also encourage the presentation of data for racial and ethnic subgroups when and where possible, as long as the results can be collapsed back into the minimum categories. Where data currently exist for key subgroups, publication should be encouraged and, if possible, made available as public use data sets. For example, data for racial and ethnic subgroups for the six focus areas are contained on the Race and Health website, and cancer incidence and mortality rates from the National Cancer Institute's SEER have been published for both the OMB standard/minimum groups and for racial and ethnic subgroups. Where possible, collection of data for racial and ethnic subgroups should be encouraged.

  2. Evaluate the possibility of collecting risk factor data for Hispanic subgroups, AA/PIs and their subgroups, and American Indians or Alaska Natives using the BRFSS, the Youth Risk Factor Survey and even a future census.

  3. Encourage the development of population-specific examination surveys targeted to small ethnic subgroups or medically underserved populations which cannot be included in the NHANES through oversampling.

• Gap: Morbidity data for Asian and Pacific Islanders, Hispanics, American Indians and Alaska Natives is lacking.

  Recommendations:

  This gap was mentioned in the Cardiovascular and HIV reports, but it may apply to the other areas as well. To fill this gap, it was recommended that:

  1. HCFA collect hospitalization data on Hispanics and Hispanic subgroups.

  2. NCHS expand the Hospital Discharge Survey to include data for those groups.

• Gap: The Cardiovascular and HIV Reports mention a need for including ethnic subgroups during the survey planning and data collection efforts.

  Recommendations:

  Two recommendations for alleviating this gap were suggested in an unpublished report titled, Race Initiative Report on Cardiovascular Disease. They are:

  1. Encourage representation on the National Committee on Vital and Health Statistics from the National Medical Association (NMA), COSSMHO, National Hispanic Medical Association (NHMA), Association of Asian/Pacific Community Health organizations, Indian Health Service (IHS), and an historically black medical school.

  2. Solicit data concerns in the planning stages of the NCHS surveys NHANES and NHIS from the NMA, IHS, COSSMHO, NHMA, Association of Asian/Pacific Community Health organizations, and an historically black medical school.

• Gap: No data exists on the effects on rates of changes in the age adjustment standard and ICD-10.

  Recommendations:

  1. Detailed studies have been conducted on the effects of the year 2000 standard population for African Americans and whites, but the effects on mortality rates on other racial/ethnic groups should be studied.

  2. Evaluate the impact of ICD-10 coding for mortality and morbidity include analyses by racial/ethnic groups.

  The following gaps and recommendations were identified in specific health focus area work group reports.

Cancer Screening and Management

• Gap: Yearly updates on screening rates are needed.

  Recommendation:

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

• Gap: NCI's SEER has been very effective in documenting current levels and trends in site-specific cancer incidence and mortality rates; those data are invaluable. The problem arises from the fact that the rates for some of the minimum racial and ethnic groups are often unstable, so that measuring recent trends is difficult.

  Recommendation:

  Although SEER has done an excellent job of reporting on racial and ethnic groups given current resources, NCI should explore the feasibility of expanding SEER and/or forming alliances with the State-based cancer registries in order to produce stable rates for the minimum racial and ethnic categories and to allow the system to produce rates for ethnic subgroups.

Cardiovascular disease

• Gap: Data are lacking on cardiovascular risk factors, including current risk factor data for Hispanic subgroups, AA/PI subgroups, and for American Indians or Alaska Natives.

  Recommendations:

  The Cardiovascular Work Group placed special emphasis on this topic and proposed several possibilities for improvement.

  1. Encourage evaluation of the possibility of collecting risk factor data for Hispanic subgroups, Asian/Pacific Islanders and their subgroups, and American Indian/Alaska Natives using the NHIS, BRFSS, the Youth Risk Factor Survey, and a future census.

  2. Encourage the development of population-specific examination surveys targeted to small ethnic subgroups or medically underserved populations which cannot be included in NHANES through oversampling.

• Gap: There is a need for nationally representative data on the incidence of heart disease and stroke.

  Recommendations:

  NHLBI has collected incidence data from different sources such as the Atherosclerosis Risk in Communities (ARIC) Study and the Minnesota Heart Survey. Although the data from those sources are relevant, the samples are too small to estimate current levels and incidence trends for the minimum standard racial/ethnic categories. Moreover, the trends for African Americans can be unstable. Therefore:

  1. NIH, CDC, and/or their contractors should continue to analyze HCFA Medicare data to establish approximate national trends in incidence, case fatality, and one year survival rates for acute myocardial infarction (AMI), congestive heart failure, and acute stroke in each major racial/ethnic group.

  2. Because HCFA data will not include incidence data on younger adults and older adults not receiving Medicare benefits, data will only be approximate. As a result, NIH, CDC, and HCFA should explore the feasibility of setting up a SEER-like registry for heart diseases and stroke.

• Gap: Local disease patterns may be masked by evaluating data at the national or State level.

  Recommendation:

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

HIV/AIDS

• Gap: Better and more accurate data on health care indicators of American Indians and Asian/Pacific Islanders are needed.

  Recommendation:

  Work more closely with service providers, consumers, epidemiologists, and providers in native communities.

• Gap: Although information on mode of HIV exposure is not required to transmit a case report to CDC, collection of risk information is very important.

  Recommendation:

  To allow the U.S. to target programs and resources most effectively, we must be able to monitor the epidemic. This means improving our 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 one State reported cases only for children under the age of six. CDC and the State public health departments should consider the feasibility of reporting all HIV infections anonymously.

Adult Immunization

• Gap: There is a need for a standardized disease-based surveillance system for influenza, with a special emphasis on expanding networks of sentinel physicians and establishing HMO and occupational-based influenza surveillance.

  Recommendation:

  CDC should be encouraged to determine the feasibility of setting up such a surveillance system.

• Gap: There is a need for rapid annual assessment of influenza vaccine effectiveness among vulnerable U.S. populations.

  Recommendation:

  CDC should be encouraged to determine the feasibility of setting up such a surveillance system.

• Gap: There is a need for more timely data on vaccination levels.

  Recommendation:

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

• Gap: There is a need for more complete adult immunization data.

  Recommendation:

  Assess the feasibility of using the NIS sample frame to survey adults.

• Gap:

  Data on vaccination levels for American Indian/Alaska Natives and Asian/Pacific Islanders populations, age 65 years and older, are lacking.

  Recommendation:

  Encourage a feasibility study on conducting special surveys of vaccination levels for persons ages 65 and over, or add vaccination questions on existing surveys of these populations.

Childhood Immunizations

• Gap: There are limited data on the success of programs targeting populations at risk of undercoverage.

  Recommendation:

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

Recommendations Culled from Work Group Reports

Infant Mortality Work Group Report--Draft of December 16, 1998.

• To support research and effective interventions for racial and ethnic subgroups, national data collection efforts should include all key subgroups.
• Significant attention must be devoted to incorporating more useful and specific racial and ethnic subgroup classifications.
• Data collection for key subgroups must be updated, and a minimum set of categories for use in all Federal data collection activities should be constructed.
• In addition to race and ethnic subgroup, a mother's origin of birth and current residence may be correlated with birth outcomes. Research should seek to include indicators such as foreign vs. U.S. born, number of years of U.S. residency, and urban vs. rural residence.

Cancer Workgroup Report--Draft of December 16, 1998.

• Centers for Disease Control and Prevention (CDC), National Program of Cancer Registries (NPCR):

  Improve the timeliness, quality, and completeness of cancer data in those 45 States, the District of Columbia, and three Territories that are funded by the Program.

  Focus audits on the accuracy of classification of racial and ethnic data elements and the complete reporting of these data items.

  Focus training on the collection of racial and ethnic data elements; the evaluation of the completeness and the accuracy of these data elements; and the importance of denominator data by race, ethnicity, sex, and age for State and county geographic areas.

  Focus technical assistance on the generation and interpretation of cancer rates and percentages by race and ethnic group for reporting purposes.

• CDC, National Center for Health Statistics (NCHS):

  Explore the feasibility of moving basic questions on mammograms and pap smear screening exams from NHIS supplements to the core questionnaire, so that they would be asked every year.

Cardiovascular Work Group Report--Draft of December 16, 1998.

• Current data needs for national data (NCHS/CDC/HCFA):

  Vital statistics should be used to develop unbiased mortality rates for Hispanic subgroups, American Indian/Alaska Natives and for Asian/Pacific Islanders; and in conjunction with the Bureau of Census, accurate population data for smaller racial/ethnic groups.

  Morbidity data should be used to develop hospitalization and prevalence rates for Hispanics, American Indian/Alaska Natives.

  Needed data on cardiovascular risk factors include current risk factor data for Hispanic subgroups, Asian /Pacific Islander subgroups, and for American Indian/Alaska Natives.

  Medical care databases should be exploited to yield current utilization data for Hispanics, Native America/Alaska Natives, and Asian/Pacific Islanders.

• Vital statistics may be better exploited for minority health by the following:

  Encouraging representation on the National Committee on Vital and Health Statistics from the National Medical Association, COSSMHO, National Hispanic Medical Association, Association of Asian/Pacific Community Health organizations, Indian Health Services, and a historically black medical school.

  Encouraging the solicitation of data concerns for planning NCHS surveys, including NHANES and NHIS, from the National Medical Association, Indian Health Service, COSSMHO, National Hispanic Medical Association, Association of Asian/Pacific Community Health organizations, and a historically black medical school.

  Encouraging an assessment of the impact of race category changes for census 2000 and of ICD-10 on mortality rates.

• Morbidity among minorities should be monitored by the following:

  Encouraging HCFA to collect data on Hispanics. Also, HCFA should collect information on race and ethnicityity, as described by OMB.

  NIH, CDC, and/or their contractors should consider continuing to analyze HCFA Medicare data to establish approximate national incidence, case fatality, and one year survival trends for acute myocardial infarction, congestive heart failure, and acute stroke in each major racial and ethnic group.

  NCHS should consider adding a Hispanic ethnicity category/methodology in data collection and improve completeness of race reporting in the National Hospital Discharge Survey.

• Data on risk factors in minorities may be enhanced by the following:

  Considering a future census as a mechanism for selected risk factor data for smaller race and ethnic groups including American Indians.

  Augmenting the BRFSS to obtain risk factor data on Hispanic subgroups, Asian/Pacific Islander subgroups, and American Indians/Alaska Natives.

  Considering increased use of the Youth Risk Behavior Survey with oversampling of minority populations in order to obtain risk factor information on Hispanic, Asian/Pacific Islander, and American Indian/Alaska Native youth.

  Considering implementation of cross-cutting recommendations on data issues from the COSSMHO National Hispanic Health Symposium and the HHS Hispanic Agenda for Action (http://www.cossmho.org/).

• Monitoring health care utilization by minorities should continue as follows:

  Consider further analyses of HCFA and other national data sets by race and ethnicity.

  Encourage HCFA to collect data on Hispanics.

  Consider addition of Hispanic ethnicity to National Hospital Discharge Survey and other surveys.

  Encouraging greater use of the BRFSS mechanism with oversampling of minority populations in order to calculate stable estimates of risk factors at both State and local levels.

  Encouraging geocoding of all health-related data in order to determine patterns of health and disease among minority populations--mortality, morbidity, risk factor, health care utilization-- patterns which may be masked when evaluating data at the State level.

• Research data (NIH/CDC) may be enhanced by:

  Encouraging funding of follow-up of adults examined in NHANES III for incidence of CVD (Cardiovascular Diseases [Major] ICD 9 Nos. 390-448).

• The Department should:

  Complete implementation of unfinished items in Recommendation 7 (Improving and fully using available sources of data) of the 1985 HHS Secretary's Task Force on black and Minority Health.

  Consider implementation of unfinished recommendations of the CVD Working Group of that Task Force (e.g. determining the incidence of sudden cardiac death in racial groups, and developing statistics for growing subgroups such as cardiac death in racial groups, and developing statistics for growing Asian subgroups such as Cambodians, Vietnamese, East Indians).

Diabetes Work Group Report--Draft of November 6, 1998.

• CDC should strengthen health surveillance data for racial and ethnic populations.
• Consistent data is needed for American Indians, Hispanic/Latinos; African Americans; and Asian/Pacific Islanders. The data should be accurate, timely, and complete.
• Existing surveillance systems should be expanded, and new data systems should be developed.
• An HHS Diabetes Data Coordinating Committee should be formed and charged with developing a plan for collecting, analyzing and disseminating timely public health surveillance data and information for all racial and ethnic populations. This committee will identify and collaborate with existing HHS committees working on data issues. The plan should be developed by March 1999, and systems in place by March 2000. The focus would be on improving data for monitoring trends in burden in the particular populations, for assessing diabetes care in health care systems, and for determining the extent of behavioral risk factors.

HIV/AIDS Work Group Report--Draft of September 30, 1998.

• There needs to be an increased awareness of HIV/AIDS disproportionate impact on communities of color. This should be measured by adding small numbers of psychometrically sound, relevant questions on national, representative surveys of the general population with over sampling of communities of color. (Measurement and analysis should be done before and after roll-out of new public information and education programs.)
• Agencies of the HHS and territorial, State and local health departments should modify current data collection methods and surveillance systems to disaggregate racial and ethnic communities by race, ethnicity, language, national origin, and tribal affiliation, report by oversampling where necessary, and conduct studies.
• Surrogate markers, such as sexually transmitted disease (STD) and unplanned pregnancy rates should be used to estimate HIV risk and to evaluate the effectiveness of risk reduction and prevention programs.
• NIH should actively recruit and retain members of racial and ethnic communities (in particular women, youth, and transgendered persons) for existing and new clinical treatment trials and vaccine trials. To facilitate this, NIH should develop a centralized data base containing demographic information and provide resources to address transportation, interpretation and translation needs. In particular, the use of community-based research sites will assist with this effort. In populations where there is under-representation, oversampling will be necessary. NIH should look for new and improved ways of addressing increased recruitment and retention needs among racial and ethnic groups.
• There is a need for better and more accurate data on health care indicators of American Indians and Alaska Natives and Pacific Islanders. This can be accomplished by closer work with service providers, consumers, epidemiologists, and providers in native communities.
• Although information on mode of HIV exposure is not required to transmit a case report to CDC, collection of risk information is very important.
• To allow the U.S. to target programs and resources most effectively, we must be able to monitor the epidemic. This means we need to improve our ability to track early HIV infections, before they progress to AIDS.
• As of December 1997, only 27 States send data to CDC on all confidentially reported cases of HIV infection. Two additional States report only cases of HIV infection among children under age 13, and one State reports cases only for children under the age of six.
• The CDC and Council of State and Territorial Epidemiologists have developed Suggested Guidelines for Developing an Epidemiologic Profile for HIV Prevention Community Planning. The Guidelines recommend that the epidemiologic profile in each prevention plan further characterize racial and ethnic groups such as the Asian/Pacific Islander population by origin (e.g., Chinese, Filipino, Japanese, Korean, Pacific Islander, etc.). However, such data is not readily available. Noting the need to collect valid information from smaller groups such as Asian/Pacific Islanders, the Guidelines also advise the collection of both quantitative and qualitative data. Qualitative data collection efforts include focus groups, key informant interviews, service provider surveys, community forums, and public hearings.
• Epidemiological research is needed on the incidence, prevalence, duration, and outcome of HIV/AIDS in various subgroups within the major racial ethnic categories presently reported. Data on the epidemiology of HIV disease within these subgroups are also needed. Epidemiologic data are needed not only to provide past prevalence risk profiles but also to project the estimates for new HIV infections. Differences for racial and ethnic groups in the rate, severity, and latency of HIV infection and the efficacy of various pharmaceutical treatments need to be examined.

Child and Adult Immunization Work Group Report--Draft of December 11, 1998.

Adult Immunization

• Systematic national surveillance of immunization rates in the target age group (Persons over 65 years of age) by race and ethnicity are needed to monitor progress toward the goal and evaluate the effectiveness of proposed interventions.
• Rigorous assessment of demonstration-scale programmatic interventions is needed before they are implemented nationally, as are criteria for selecting the most effective candidate interventions.
• In the long term, the Data Work Group of the Initiative to Eliminate Racial and Ethnic Disparities should create a Department-wide "warehouse" of results from immunization projects targeted at minority populations by community grantees or federal agencies. A centralized collection of data and systematic evaluation of effectiveness should help identify the approaches and types of intervention that are most successful in specific populations. Interventions that are consistently successful on a local scale should be funded on a national basis.
• Optimal disease surveillance is needed to detect changes in disease incidence and ensure that the impact of immunization programs on disease incidence can be evaluated.
• Ethnographic and other types of research on patient acceptability of immunization and reasons for non-immunization need to be conducted.
• Surveillance of immunization use must continuously assess progress in immunization coverage rates. These data are needed to ensure that immunization programs are achieving coverage and disease reduction goals within target populations, including patients who are traditionally underserved and who require special efforts to ensure that they are offered immunizations. As a result of this information, public health prevention strategies can be appropriately altered to improve their effectiveness.

Surveillance of Influenza and Pneumococcal Disease

• Expand and standardize disease-based surveillance for influenza both in the United States with a special emphasis on expanding networks of sentinel physicians and on establishing HMO and occupational-based influenza surveillance.
• Perform annual rapid assessments of influenza-vaccine effectiveness among vulnerable U.S. populations.
• Evaluate and modify current State activity assessment levels for influenza.
• Continue and enhance current active, population-based surveillance for invasive pneumococcal disease, including additional studies to identify causes of higher incidence rates among American Indians, blacks and possibly other racial and ethnic minority groups.

Research on Patient Acceptability of Vaccination

• Conduct ethnographic studies to identify factors influencing vaccination behavior among racial and ethnic minorities.
• Supplement vaccination coverage questions on surveys with additional questions related to doctor recommendations, reasons for vaccination and non-vaccination, and type of setting where vaccination is received.
• Conduct controlled studies of provider-based and patient-based interventions to improve vaccination levels in racial and ethnic minority populations.

Surveillance of Vaccination Use

• Improve time of availability of NHIS- and BRFSS-reported vaccination levels to less than one year after data are collected.
• Assess the feasibility of using the NIS sample frame to survey adults.
• Conduct special surveys of vaccination levels for Asian/Pacific Islander and American Indian/Alaska Native populations aged 65 years or more, or consider adding vaccination questions on existing surveys of these populations.
• Surveys of Hispanic, AA/PI and American Indian populations should collect information on national origin.
• Assess the validity of self-reported pneumococcal vaccination.
• Assess if managed care organizations using the HEDIS influenza vaccination measure can stratify vaccination levels by racial and ethnic group.
• Encourage development of a HEDIS measure for pneumococcal vaccination (CDC is currently working with a managed care organization to develop and evaluate such a measure).
• Consider development of mechanisms to monitor immunizations at workplaces and free-standing sites (e.g., grocery stores, pharmacies) during vaccine campaigns.

Childhood Immunizations

• Current efforts to assess vaccination coverage, including the National Immunization Survey, the National Health Interview Survey, and immunization assessment programs in the 50 States and 28 urban areas should continue.
• Collection of data on Hispanic ethnicity should be expanded to include specific data on ancestry (i.e. Cuban, Puerto Rican, Mexican, etc.) because this information would allow the design of more appropriate activities to increase coverage in different Hispanic communities. Similar efforts are needed for Asians and American Indian/Alaska Natives.
  Efforts to collect information on race and ethnicity and socioeconomic status should be included in assessments of coverage at the local level.
• Studies of the effectiveness of interventions to increase coverage in specific minority communities should form the basis for expanding interventions beyond the pilot and demonstration scale.
• Additional progress in eliminating disparities in coverage can be expected from allocation of additional resources to existing programs and proven strategies (i.e., linkage of immunization efforts and the WIC program, targeted assessments of immunization coverage among private providers who serve poor infants and toddlers, partnerships exemplified by the TOTS program), especially if these efforts are buttressed by surveillance, immunization coverage by race and ethnicity, and socioeconomic status at the local level.
• In the longer term, implementation of a system of State-based immunization registries could be used to evaluate the success of programs that target populations at risk of undercoverage.
• Continue to collect information on vaccine coverage, representative of the U.S. population, and including race and ethnicity and socioeconomic status.
• Expand the Hispanic ethnicity question to assess ancestry information, since this information would allow the design of more appropriate activities to increase coverage.
• Increase efforts to assess coverage at the local level and include race and ethnicity and socioeconomic status with simultaneous efforts to protect confidentiality of participants.
• Conduct studies to evaluate interventions to increase vaccine coverage among specific racial/ethnic minorities at risk of undercoverage and implement activities that have demonstrated effectiveness."
• Although some States have already implemented immunization registries, in the long term, a national system of registries is needed. These systems will provide coverage information at the individual level as well as in aggregate summaries. On an individual level, each registry will serve to identify persons needing immunizations, generate reminders to the person, and provide information on contraindications and adverse events. On a population level, registries will provide summaries of the immunization status and identify populations in need of immunizations. Furthermore, data from registries could be used to evaluate the success of programs targeting populations at risk of undercoverage.
• Population based surveys will remain essential in the long term to evaluate representativeness and validity of registries.

Appendix C Summary of Racial and Ethnic Data Concerns Related to Healthy People 2010

To strengthen data systems used to provide baseline and monitoring data for Healthy People 2010, the DHHS held five regional meetings throughout the country in fall 1998 to solicit public comment. HHS also engaged in discussions with data users and data system managers both internally and externally to the Department, regarding ways to present the data, set targets for the year 2010, and eliminate gaps in data collection for racial and ethnic minority populations. During the regional meetings, participants recommended ways to improve racial and ethnic data for Healthy People 2010. The statements, questions, and recommendations provided below are culled directly from written and verbal comments delivered at the various meetings.

Need to be responsive to changes that are occurring

1. Changes to the International Classification of Diseases codes for mortality (ICD-10) and morbidity. Compared to ICD-9, it will see an increase in cardiovascular disease and cancer mortality, and decrease in chronic liver disease and cirrhosis, and pneumonia and influenza mortality. Asked whether would re-calculate by cause.
2. Changes in classification of race and ethnicity by Federal agencies (October 1997 revision of OMB Directive No.15). In addition to changes in terminology, the recommended order of questions on race and ethnicity, encouraging the two question format, creating new Native Hawaiians and Pacific Islander category, are allowing persons to identify with more than one race. How will Federal government and others use race and ethnicity data for those who indicate more than one race? Asked what happened to non-Hispanic whites and blacks. NCHS has been asked to tabulate natality data by race of the child. What about Middle Easterners?
3. Change in standard for age adjustment. Why not compare age-specific rates by race and ethnicity? Suggest adding a note stating that age-adjusted rates and numbers are based on year 2000 standard population.

Overarching data needs identified

4. Funding for data and link to resources. Hard to garner funds for data collection at local level with change of program administration down to local level. Need to ask decisionmakers what they want to know, need to get buy-in from policy people.
5. Need for national and State monitoring and surveillance. How does Federal government plan to provide for State and local estimates? Need information on community basis.
6. Need for more detailed studies of relative importance of underlying factors. How do we examine all of these underlying factors together? Need discussion of the underlying factors. Need to address underlying factors in Healthy People 2010 objectives; high school education not sufficient (e.g., poverty).
7. Need for better evaluation of programs funded by Federal government.

Other data issues

1. How are targets set? In general, support single target, but there was at least one question of using the better than the best approach (unachievable).
2. Patient satisfaction data needed. There are not many tracking systems available to States and perhaps national level for health services use and access. Concern about Government Performance and Results Act (GPRA). GPRA measures are outcome measures while process is easier to measure at the local level. Problematic to address Healthy People 2000 objectives in grant application.
3. SES and disability status should be used to breakout objective data.
4. Rural area data?
5. How do we train States and others on these data issues? How do we plan to inform people of these changes?
6. Aggregate vs. detail
7. Time to make changes (eight years), since can't get people to code. May not feel comfortable using data collected by other agency.
8. Important to find "victories" in the data and be able to say something good has happened.
9. Healthy People 2000 contained a chapter on Surveillance and Data Systems. For Healthy People 2010, only a few objectives addressed data within the Public Health Infrastructure chapter. Considering the importance of data for setting baselines and monitoring, especially for low income, racial/ethnic, and disabled populations, it is imperative that surveillance and data be given higher visibility in Healthy People 2010. Health information and data are core public health functions and should be emphasized in Healthy People 2010 (California Conference of Local Health Officers).

Recommendations and comments submitted during the formal public comment period in fall 1998

1. For the national health objectives to be used at the State and local levels, data systems need to be identified which allow States and local communities to track progress toward the targets (CSTE). If State-level data are not available, then the objective should be noted as "developmental." Preference should be given to objectives which can be analyzed at State and local levels.
2. Federal agencies should work together and with States, to assure comparability in data collection methods, operational definitions, and standardized indicators. AAPCHO notes that standardizing data sets to make them compatible, comparable, and useful for review and planning for local, State or regional issues and concerns are critical.
3. National health objectives on data system development should be included in every chapter.
4. Extend to all 50 States the capacity for public health surveillance of injuries and other acute health problems using data generated during emergency department visits and reported through electronic networks.
5. Identify and create, where necessary, national data sources for each objective related to blindness and visual impairment.
6. Use national Federal sources of cancer statistics (e.g., SEER, NCHS).
7. State efforts are fragmented by competing needs for data from many of the funding agencies (e.g., NIH, CDC), and State needs to track objectives (Maine Department of Health and Human Services). Achieving consensus about the diseases, conditions, risk factors, services and outcomes that should be under surveillance or subject to assessment throughout the Nation would be helpful to State and local organizations. Basic data collection efforts such as vital statistics should be recognized and stated as essential and integral to the public health infrastructure. Federal agencies need to recognize and support the infrastructure to collect and disseminate data, as well as the process of applying data for program planning, implementation and evaluation by allowing financial support for data infrastructure and application procedures in their block grants and categorical grants.
8. Mental health and substance abuse communities, the social service system, and the criminal justice system need to be included in integrating data systems.
9. Managed care systems and insurance organizations should be explored as possible partners in collecting and disseminating data.
10. Healthy People 2000 objective 22.4 was never addressed, and still should be considered for Healthy People 2010: "Develop and implement a national process to identify significant gaps in the Nation's disease prevention and health promotion data, including data for racial and ethnic minorities, people with low incomes, and people with disabilities of all ages, and establish mechanisms to meet these needs." The Latino Coalition for Healthy California noted that a plan to obtain data for Latinos for each objective needs to be developed, including gender and birthplace.
11. Standard definitions of children with special health needs, children with disabilities, family support services/community-based care, resiliency, and other data elements/outcome measures should be developed.
12. Disability, along with race and ethnicity, should be incorporated into demographic sections of national surveys and State-level data collection tools.
13. Develop a set of health status indicators appropriate for Federal, State and local health agencies, and establish use of the set in at least 40 States. National and State surveys using the health status indicators should be required to include disability identifiers.
14. An objective should be added to measure satisfaction with health information obtained during their most recent search for information.
15. An objective should be added to increase the proportion of Healthy People 2010 objectives that can be tracked for select populations.
16. An objective should be added to improve the availability and consistency of data on public health expenditures by essential public health services.
17. An objective should be added to increase the number of public health agencies that use summary measures of population health and the public health infrastructure.
18. NIH and other research vehicles must examine and restructure their funding priorities. Researchers and research institutions that examine health status indicators that can be used for Healthy People 2010 should be prioritized and targeted for additional funding to conduct this type of research. Furthermore, funding streams for research vehicles collecting baseline data on racial/ethnic health status should receive adequate funding proportional to the racial/ethnic populations being examined.
19. Alternative databases/data sets (e.g., State, regional, local data) should be used to augment current data collection, especially when national data are limited due to sample size (AAPCHO, LCHC).
20. When not available, AAPCHO would like this further explained: (1) data were not collected; (2) data have been collected but not analyzed; (3) data have been analyzed but have not been reported due to sample size or other methodological issues.
21. HHS should disseminate guidance on sentinel or other appropriate data that can be used in the interim while national database/systems are being developed or upgraded to meet the new OMB Directive No.15 Standards.
22. AAPCHO recommends that HHS increase the data collection and surveillance of critical health issues (e.g., tobacco, environmental health, diabetes) among the six U.S. associated Pacific Island jurisdictions. HHS must work through the proper channels (i.e., Ministries of Health in Republic of Palau, Marshall Islands and Federated States of Micronesia; Departments of Health in Guam, CNMI and American Samoa) to ensure that appropriate objectives are developed.
23. It was noted that, of the 521 numbered objectives, only 100 (19.19 percent) have collected baseline Hispanic data. Therefore, a specific goal for Hispanics should be included under each objective for, but not limited to, the following sections: arthritis, osteoporosis and chronic back conditions, cancer, health communication, public health infrastructure, heart disease and stroke, diabetes, HIV, substance abuse, tobacco use, environmental health, immunization, and infectious disease. In addition, it was recommended that baseline and tracking data systems be identified, and data collected, analyzed and reported, for the aforementioned sections.
24. Data for females aware of heart disease as the leading cause of death should include linguistically competent data collection in place of the telephone survey (Objective five, Heart Disease and Stroke Chapter).
25. Behavioral Risk Factor Surveillance System should be used as a data source to get racial/ethnic group data for the breast examination and mammograms objective and Pap tests objective (Objectives 13 and 10, respectively, Cancer Chapter).
26. The cancer registries should add a sub-objective to capture data broken down by race and ethnicity (Objective 15, Cancer Chapter).
27. Include persons with disabilities as a select population as well as incorporate questions on disability into all existing and future data collection efforts conducted by the Federal government.
28. Nineteen developmental objectives for vision were suggested, including "Identify and create, where necessary, national data sources for each of the blindness and visual impairment-related objectives".
29. A reexamination of the decision to drop the data and surveillance goals from Healthy People 2000 and the re-inclusion of Chapter 22 in Healthy People 2000 on data and surveillance issues was suggested, given the importance of reliable data to monitor the Healthy People 2010 objectives. For example, with the addition of new objectives and revision of others in Healthy People 2010, it would seem that carrying the intent of several of the objectives from Chapter 22 would be crucial. The omission of 22.2 implies moving away from taking the lead at the national level for identifying and creating data sources to monitor the Healthy People 2010 objectives. HHS is passing the lead to the State and local agencies to develop and implement the processes and mechanisms with the omission of objective 22.4, which was part of Healthy People 2000. There does not appear to be a Healthy People 2010 counterpart addressing procedures for collecting comparable data and incorporating these procedures into the national health data system, or a comparable Healthy People 2010 objective for several of the objectives from Chapter 22.
30. "Increase quality and years of healthy life" are great goals, but there is not a commitment to data collection to see if the goals are met. Availability of data, collection strategies, utilization of other existing data, and payment of the costs of data collection are some of the issues that need to be addressed to "measure and assure" that the goals in Healthy People 2010 are achieved.
31. It was suggested that the final set of objectives use the updated Healthy People 2000 standard population for age adjustment.
32. There should be a requirement that data be collected at the national, State and local levels, if subgroups are to be represented. The private sector (HMOs, MCOs, etc.) should be providing data.
33. Certain "special populations"--prisons, military, reservations, and farm workers--are not addressed, and should be included in every section.
34. All American Indian and Alaska Native tribes should be tracked in terms of their health status.
35. The Background does not mention the BRFSS, but it is often mentioned as a data source for specific objectives. This system was not designed to make national estimates, and its appropriateness for making such estimates has not been established. Many of the objectives cite the BRFSS as the major data source. It was recommended to require a review by an independent group of the issues related to such use.
36. It was noted that comparable questions do not necessarily mean comparable data. A systematic review of the comparability of results from BRFSS and NHIS was recommended.
37. Because the BRFSS only provides a State-level estimate of adult diagnosed diabetes (>80 years old) and State prevalence rates vary from national prevalence rates, direct substitution may not be appropriate.
38. While data may not be available, the objectives should still be stated in a measurable way. Goals cannot be achieved if there is no way to measure the extent to which related objectives have been accomplished. The Summit Health Coalition recommended that the U.S. Surgeon General convene a national working conference before the year 2000 to develop solutions to technical and implementation issues related to race and ethnicity data collection, to be attended by representatives of Federal, State, and local government agencies and the private sector, with substantial participation from minority communities.
39. Because indicators should identify and prioritize the most important aspect of each focus area, it was recommended to reduce the number of indicators to five to ten within each focus area, and include a similar number of measurable, practical indicators per focus area, as well as an established time frame for accomplishment. In addition, these indicators should be directly tied to existing data measurement tools or data collection systems currently in place or under development.
40. The American Dietetic Association suggested that HHS use BRFSS as a data source and consider leading health indicators that address healthy eating and obesity.
41. Emphasis on epidemiology services is limited, and it was suggested to broaden this objective to include behavioral research and other evaluation areas that are practice-based. A similar recommendation pointed out that the team described is not a comprehensive epidemiology team, but an interdisciplinary data/epidemiology/evaluation research team of which epidemiology is a part.
42. Newer evaluation models that include community-level indicators and policy change indicators should be developed and disseminated.
43. An asthma surveillance system is crucial to successfully addressing respiratory disease. One example suggested establishing a surveillance system in at least 15 States to track asthma mortality, morbidity, access to medical care and asthma management for children 1 to 4 years old, 5 to 14 years old and 15 to 19 years old, in addition to the adult population of adults with asthma (Objectives zero and 13, Respiratory Disease Chapter).
44. A statistical survey on representative drink servings, which has been proposed to members of the Dietary Guidelines Advisory Committee, should be conducted by HHS and SAMHSA. The survey would gather data from a sufficient number of restaurants, bars, nightclubs and other establishments to determine a scientifically defensible definition of "one drink". This approach would allow alcohol-related health policy to be used on accurate and meaningful data (Substance Abuse Chapter).
45. A significant issue is the State's capacity to collect and use data; Objective 19 helps prioritize oral health surveillance. Also noted was the need for more systematic, comprehensive and usable data on the oral health status of minorities (Objectives nine and 19, Oral Health Chapter).
46. Because primary and secondary syphilis is 13 times more prevalent among Hispanics than among whites, relevant data on Hispanic populations is needed (Objective one, STD Chapter).
47. Few data are available to indicate whether dropping out of school increases the use of tobacco, or whether tobacco use is an indicator of who may or may not drop out of school. Also, there are no data linking drop-out rates, levels of education and tobacco use in one set of goals and objectives, ergo, smoking rates.
48. It was recommended, as part of the State-wide cancer registry, that case information be stratified by age, including a zero to18 year category, to better effectively track the rate of childhood cancers (Objective 15, Cancer Chapter).
49. Because non-physician primary care providers, such as nurse practitioners and certified nurse midwives, place a higher priority on addressing health behaviors and preventive services compared to physician PCPs, data should include the non-physician PCPs.
50. The lack of potential data sources for objectives in the Mental Health and Mental Disorders Chapter was indicated.
51. A better presentation for early identification of infants and children at high risk for developmental disabilities was recommended. Because the population included in the Metropolitan Atlanta Developmental Disabilities Surveillance Program consists of school-aged children rather than infants and toddlers, it was recommended that State Birth Defects Registries be strengthened to serve as a primary data source. Several States have developed methodological approaches based on the selection of specific ICD-9 codes, extracted from the Birth Defects Registry, and those are used to predict rates of developmental disabilities.
52. Until a more accurate national surveillance system for violence against women has been established, incidence and prevalence data should be listed as a range (Objective 38, Injury/Violence Prevention Chapter).
53. For objectives addressing deaths, hospitalization and emergency room visits, the goal is to first collect data, consistently in each State, in order to project a national target. The ICD codes used to measure each objective should be specific. Because interest lies in "intent" for the injury, it would be more useful if E-codes could be used to measure the rates (Objective one, two, nine, 10, 13, 14, 23, 28, 30, Injury/Violence Prevention Chapter).

Appendix D Summary of Previous Reports Dealing with Racial and Ethnic Data

Approach

The Working Group on Racial and Ethnic Data reviewed recommendations and strategies developed by previous internal and external advisory groups for the purpose of identifying high priority racial and ethnic data issues that warrant the attention of the HHS Data Council, and to make recommendations on how they might be addressed. Reports from the following groups were reviewed:

• Secretary's Task Force on Black and Minority Health (1985)
• PHS Task Force on Minority Health Data
• Surgeon General's Hispanic/Latino Health Initiative
• National Asian Pacific American Families Against Substance Abuse, Inc.

The recommendations addressed the full spectrum of activities and resources needed to support a comprehensive minority health data development program in the Department. Although the recommendations overlapped considerably, in general, a number of recurrent issues became apparent. The recommendations were divided into the following data issue categories:

1. Funding
2. Infrastructure
3. Policy and Legislation
4. Cooperative Efforts Among Federal, State, Local Agencies, Private Groups, Researchers, etc.
5. OMB/Identifiers/Subgroups
6. Evaluation/Methodology/Quality
7. Oversampling or Target Surveys
8. Content/Relevance
9. Analysis/Publication/Dissemination
10. Training/Technical Assistance
11. Representation

In each of the above categories, recommendations were further identified by the Working Group as representing a continuing effort, ongoing and continuous need, short term need, and long term need, defined as follows:

1. Continuing effort. HHS has started to address this recommendation, and the effort has become an integral part of an agency's or other operational unit's mission and procedures.

2. Ongoing and continuous need. HHS has begun to address this recommendation, but the level of effort needs to be increased.

3. Short term need. The recommendation could be implemented in the near future with few additional resources.

4. Long term need.. The recommendation requires significant resources to implement, or would require significant changes in legislation, policy, methodology, or other operations.

The recommendations assigned to the category "Other" were not characterized according to level of effort.

A number of recommendations have already been addressed by the Department; other recommendations require varying levels of resources for their implementation. The Working Group paraphrased and updated some recommendations to reflect activities that took place between the time of publication and the present and occasionally added cross-references and/or other comments. The specific recommendations within the 12 data issue categories are listed below.

1. Funding

1985: Task Force on Black and Minority Health

Long term

• PHS should support targeted, smaller scale surveys and studies to develop data for minority populations and, especially, subpopulations. For most smaller minority subpopulations, this approach should be the primary method for data development. Such studies should employ measurement approaches which will make them comparable to national estimates for the general population. To support these studies, the NCHS Disadvantaged Minority Health Improvement Grant Program should be supported at an adequate level.

1993: Surgeon General's National Hispanic/Latino Health Initiative

Partially overtaken by events; review for current status

Compare to commentary on recommendation immediately above

Ongoing and continuous need

Long term

Ongoing and continuous need

Short term

2. Infrastructure

1992: PHS Task Force on Minority Health Data

Ongoing and continuous need

Short term

Short term

Short term

Short term

3. Policy and Legislation

1985: Task Force on Black and Minority Health:

Ongoing and continuous need

1993: Surgeon General's National Hispanic/Latino Health Initiative

Long term. Review for applicability (maybe by General Counsel)

No authority

Compare to commentary on two recommendations immediately above

Short term

Ongoing and continuous need

1993: Surgeon General's National Hispanic/Latino Health Initiative

Long term

Ongoing and continuing

Vague; but improvements are ongoing and continuing

Vague; but improvements are ongoing and continuing

Short term

Clarification of intent and status needed

Short term

4. Cooperative Efforts Among Federal, State and Local Agencies, Private Entities, Researchers, Etc.

1985: Task Force on Black and Minority Health:

Ongoing and continuing effort

Ongoing and continuing effort

Ongoing and continuous effort

Ongoing and continuous need (where feasible)

Completed 1990

Feasibility for 2000 questionable

Completed (NCHS linked file of infant births and deaths)

1992: PHS Task Force on Minority Health Data

Long term

Intercensal estimates of four broad population groups now available; feasibility of subpopulation and other demographic variables questionable

Refer to IHS

1993: Surgeon General's National Hispanic/Latino Health Initiative:

Ongoing and continuous effort

Short term

Ongoing

5. OMB/Identifiers/Subgroups

1985: Task Force on Black and Minority Health

Ongoing and continuing effort

Ongoing and continuing effort

The 1989 revision of the standard registration certificates for births and deaths include Hispanic identifiers

Short term

Ongoing and continuing effort (where feasible)

1992: PHS Task Force on Minority Health Data

Ongoing and continuous need

Long term

Completed and continuing effort

Refer to IHS

Short term where feasible without retooling

Short term where feasible without retooling

1993: Surgeon General's National Hispanic/Latino Health Initiative

Ongoing and continuous need

Short term where feasible; partially ongoing and continuous efforts

Short term

Appears to be not feasible

1993: National Asian Pacific American Families Against Substance Abuse, Inc.

(12/17/93 memo to Peter Edelman)

Refer to NIDA

6. Evaluation/Methodology/Quality

1985: Task Force on Black and Minority Health

Ongoing and continuing effort

Ongoing and continuing effort

Ongoing and continuous need (see Legislature section)

1992: PHS Task Force on Minority Health Data

Ongoing and continuing effort

The Parklawn Health Library and the Office of Minority Health (OPHS) have developed an annotated bibliography of the literature relating to the measurement of race and ethnicity in health statistics.

Ongoing and continuing effort

NCHS and OPHS are collaborating in a study of racial and ethnic classification of Hispanic and multiracial mothers.

Ongoing and continuous need

Ongoing and continuing effort

Ongoing and continuing effort

Ongoing and continuous need

Short term

Address previous and current efforts; feasibility

1993: Surgeon General's National Hispanic/Latino Health Initiative

Short term (refer to Section 2, Infrastructure)

Ongoing and continuing effort

Ongoing and continuous need (where feasible)

7. Oversampling or Target Surveys

1985: Task Force on Black and Minority Health

Ongoing and continuous need

Ongoing and continuous need (See above)

1992: PHS Task Force on Minority Health Data

Ongoing and continuous need

Ongoing and continuous need

Blacks and Hispanics are oversampled in NHIS

Short term

Status?

Short term

Short term

Funding addressed in section 2, Infrastructure

Long term

1993: Surgeon General's National Hispanic/Latino Health Initiative

Short term

8. Content/Relevance

1985: Task Force on Black and Minority Health

Short term

Completed in 1990; feasibility for 2000 questionable (See section 4, Cooperative efforts)

Work with the Bureau of the Census to improve health-related, minority-specific data collection for the 1990 census.

1992: PHS Task Force on Minority Health Data

Ongoing and continuous need

Health United States is including more tables of race and ethnicity and socioeconomic status.

Ongoing and continuous need

Ongoing and continuous effort

Ongoing and continuous effort

Ongoing and continuing effort

Input needed from each agency

-- ADAMHA should build and expand upon existing profiles of minority populations based on its alcohol, drug abuse and mental health surveys and epidemiological studies relating to the prevalence, correlates and consequences of ADM disorders, the treatment system, the use of services and associated expenditures.

-- In collaboration with OMH, NCHS, AHCPR and IHS should intensify efforts to analyze and disseminate the unique minority data obtained in the Hispanic Health and Nutrition Examination Survey and the Survey of American Indians and Alaska Natives.

-- CDC should promote improved information on minority populations in all of its existing and planned public surveillance systems and applied research activities.

-- FDA should develop improved information on minority populations in its consumer surveys.

-- AHCPR should improve information on minority populations available from its survey, research and analytical activities, especially the next cycle of the National Medical Expenditure Survey.

-- NIH should improve the information on minority populations available from its epidemiological research and statistical activities.

Input needed from HRSA

Input needed from HRSA

Input needed from HRSA

Ongoing and continuous need

Ongoing and continuous need

1993: Surgeon General's National Hispanic/Latino Health Initiative

Ongoing and continuous need

Ongoing and continuous need

Completed

National Asian Pacific American Families Against Substance Abuse, Inc. (12/17/93 memo to Peter Edelman)

Need input from appropriate program(s)

Need input from appropriate program(s)

Need input from appropriate program(s)

Need input from appropriate program(s)

Need input from appropriate program(s)

9. Analysis/Publication/Dissemination

1985: Task Force on Black and Minority Health

Short term

Completed 1990

Feasibility for 2000 questionable (See section 4, Cooperative efforts)

Ongoing and continuous need

1992: PHS Task Force on Minority Health Data

Short term

(See section 6, Methodology)

Ongoing

Short term

Ongoing and continuous effort

Short term

Ongoing and continuous need

ASPE and AHCPR updated and expanded the directory to include other agencies within the Department. The Directory is now on the Department's Internet homepage.

Short term

Feasible for vital statistics

Short term

(See section 6, Methodology)

Short term

(See section 4, Cooperative Efforts)

Ongoing and continuous need

1993: Surgeon General's National Hispanic/Latino Health Initiative

Ongoing (included in other recommendations)

Short term

Short term

Short term

Ongoing

Short term

Short term

(See section 2, Infrastructure)

Short term

10. Training/Technical Assistance

1993: Surgeon General's National Hispanic/Latino Health Initiative

Ongoing and continuous need

Ongoing and continuous need

Short term

Short term

(See Section 5, OMB/Identifiers/Subgroups)

11. Representation

1993: Surgeon General's National Hispanic/Latino Health Initiative

Ongoing and continuous need

Ongoing and continuous need

Feasibility beyond National level questionable

Authority questionable

Long term

(See section 2, Infrastructure)

Ongoing and continuous need

Feasibility in question

Short term

Authority in question

1993: National Asian Pacific American Families Against Substance Abuse, Inc.

(12/17/93 memo to Peter Edelman)

Refer to appropriate program(s)

Completed

Refer to appropriate program(s) but may be overtaken by time

Appears to not be feasible but refer to appropriate program(s)

12. Other

1993: Surgeon General's National Hispanic/Latino Health Initiative

• During current Federal and State budget appropriations hearings, request additional funds to take advantage of the resources being developed for the third National Health and Nutrition Examination survey. These funds should be used: (1) to update the data collected on Puerto Ricans and Cubans during the Hispanic Health and Nutrition Examination survey, and (2) collect, for the first time, detailed health data on other Caribbean and Central and South American subgroups in areas where they are geographically focused.
• During Federal and State budget appropriations hearings, request additional funds to take advantage of the resources already developed for the third National Health and Nutrition Examination Survey. These funds should be used to: (1) update the data collected on the Puerto Rican community in the New York City metropolitan area during 1984, and (2) collect, for the first time, detailed health data on Caribbean and Central and South American subgroups. Appropriation of funds should not wait for the fourth National Health and Nutrition Examination Survey. Taking advantage of already trained staff and existing questionnaire and other survey materials from the current survey (to be completed in 1994) should result in an economy of scale.
• Allocate funds in Federal, State and local health programs to pay for data collection, analysis and dissemination of Hispanic/Latino health data so that progress in improving Hispanic/Latino health status, and ultimately the health status of the Nation, can be tracked. Government agencies that use these data, but do not produce data, should share in the expenses of data collection, analysis and dissemination.

  Short term

• Employ culturally and linguistically appropriate interviewing techniques at all times when conducting surveys on Hispanic/Latino health issues. For example, dependence on telephone interviews is inappropriate for Hispanic/Latino communities with high rates of telephone non-coverage.

  Short term

• Identify and develop funding mechanisms for survey methodologies to study Hispanic/Latino subgroups. Additional funds should be allocated to the National Center for Health Statistics' Minority Health Statistics Grant program and census survey research programs to support targeted research to develop appropriate, culturally competent, and linguistically sensitive survey methodology to study subgroups of Hispanics/Latinos. Consideration should be given to the undocumented and recent immigrants.

  Short term

• Increase funding by county, State and Federal health departments and agencies to provide technical assistance and training for data collection and analysis of Hispanic/Latino health data.
• Fund county, State and Federal Hispanic/Latino health research and data analysis training centers.
• Provide support for local, State, regional and national Hispanic/Latino health data forums, conferences and workshops.
• Develop funding incentives to increase the use of Hispanic/Latino health databases by public and private entities.
• The Office of Minority Health should strengthen its leadership and policy coordination activities in the area of minority health data across all PHS agencies and activities.
• OMH should establish an ongoing Minority Health Data Advisory Committee. The committee would serve as the PHS-wide forum for continuing communication, coordination, planning and oversight of minority data activities within PHS. The Committee should develop a long term plan for addressing the most important health data gaps for minority populations.
• Each PHS agency should designate an agency-wide contact person for minority health data. The individual would serve as the principle resource person regarding minority data plans, issues and activities within the agency, and would serve as a liaison to other agencies.
• The National Center for Health Statistics should establish an organizational unit devoted to minority populations. The unit should be adequately staffed and serve as the central focus for technical leadership, planning, analysis and dissemination of general purpose statistics on minority populations across all Center programs.
• Identify a person in each agency or organization who collects and disseminates data to serve as the principal point of contact for Hispanic/Latino data analysis.
• Establish local, State, regional and national Hispanic/Latino health data clearinghouses.
• Develop mechanisms for matching individual records from among government data sets, within and between Departments, for health and statistical research purposes. HHS should encourage and support legislative changes to allow such matching to occur with the appropriate safeguards.
• Establish Federal, State and local laws to ensure confidentiality of respondents and to provide absolute protection of respondents from use of the identifying information by law enforcement and immigration authorities.
• Pass State laws requiring the collection of data on Hispanics/Latinos, especially in States with large Hispanic/Latino populations. The California legislation can be used as a model.
• Establish Federal, State and local laws to ensure confidentiality of respondents and to provide absolute protection of respondents from use of the identifying information by law enforcement and immigration authorities. Such laws should not restrict the linkage of data sets for the purposes of aggregate epidemiologic analyses and program development.
• To improve the research base on minority health, PHS should consider applying the current NIH-ADAMHA research grants policy on inclusion of minorities in extramural research activities to all PHS agencies.
• To promote wider availability of minority data, OMH should consider the establishment of a full service, minority health data resource center or archive to assist Federal and outside data users in obtaining needed minority data. Modeled after similar data resource centers in other areas, e.g., aging, the center would provide a national resource for major data sets dealing with minority health, analyses and publications, as well as technical assistance.
• Tie the release of Federal funds to States to the collection and reporting of Hispanic/Latino ethnicity data. Data collection and reporting should include both documented and undocumented Hispanics/Latinos.
• Set timelines for improving data collection for Hispanics/Latinos.
• Include the improvement of Hispanic/Latino data collection, analysis and dissemination in Federal, State and local strategic plans, such as Healthy People 2000, Minority Health Activities, and Primary Care Access Plans.
• Develop and disseminate written guidelines for confidentiality. Such guidelines should include a requirement for a detailed rationale for collecting and using data items. In addition, the guidelines should include a procedure for true informed consent in obtaining data from Hispanics/Latinos.
• NIDA, NIAAA, and the new NIH Office of Alternative Medicine [should] be given a mandate from the Secretary to implement a comprehensive action plan to fund appropriate research on alcohol, tobacco, and other drug and related problems for the Asian and Pacific Islander populations. NIDA must find a way to produce drug abuse research regarding Asian and Pacific Islanders.
• Enforce OMB Directive 15 and Public Law 94-311 among Federal agencies. Educate Federal agencies about the use of OMB Directive 15 for inclusion of Hispanics/Latinos (and Hispanic/Latino subgroups) in data systems, and in federally funded intramural and extramural research programs.
• HHS should undertake activities, which would improve existing sources of health data, such as: enhancing cooperative efforts with the States in recording vital statistics, incorporating specific racial/ethnic identifiers in databases, and oversampling selected minorities in national surveys. Furthermore, HHS should support innovative uses of currently available data consistent with the Privacy Act and confidentiality constraints. Analyses such as cross-comparisons from different data sets and specialized studies should be encouraged because they can contribute to understanding the health status and needs of minority populations.
• The 1989 revision of the standard registration certificates for births and deaths include Hispanic identifiers
• Assign high priority to cooperative efforts between HHS and the States directed at developing standardized Hispanic identifiers in vital statistics records (death, birth, marriage, and divorce certificates).
• Strengthen and expand cooperative efforts to train personnel to complete vital statistics records accurately (particularly with regard to correct coding of causes of death and racial/ethnic identifying items).
• Maintain specific racial/ethnic identifiers when processing original data. For those data collected cooperatively from the States by agencies such as CDC and NCHS, efforts should be increased to overcome barriers to obtaining data with standardized racial/ethnic identifiers.
• Work with the Bureau of the Census to improve health-related, minority-specific data collection for the 1990 census.
• Strengthen and expand efforts between the Department and the States to develop a national database of linked birth and death records for analyzing Hispanic mortality.
• CDC/NCHS should work with the Bureau of the Census to develop intercensal population estimates on a national and State basis for racial and ethnic minority populations and subpopulations to serve as denominator data. In addition, CDC/NCHS should work with the Bureau of the Census to develop national and State-level estimates of social and economic characteristics of racial and ethnic minority populations for intercensal years.
• IHS, in collaboration with NCHS, should explore with appropriate States the potential for adding information on principal Indian Tribe or Alaska village on the birth and death certificates of appropriate States.
• Conduct a national conference--cosponsored by the National Center for Health Statistics, other parts of the Centers for Disease Control and Prevention, the Commerce Department, the Department of Justice, the Environmental Protection Agency, and other Federal agencies-- to improve the coordination of data collection, analysis and dissemination, with the goal being to reduce the burden of voluntary and mandatory reporting by the States, and to improve the consistency of reporting of racial/ethnic origin. Recommendations based on the findings from the 1993 PHS Task Force on State and Community Data should be used to help develop the agenda for the conference. Among the products of this conference should be guidelines for comparability and plans for providing, on a continuous basis, technical assistance and resources to State and local agencies responsible for data collection. This conference should take place by 1995 at the latest to ensure that tracking of Healthy People 2000 objectives can be based on consistent and accurate data.
• Use existing data systems (e.g., Bureau of the Census and the National Center for Health Statistics) to establish cooperative agreements with States to develop standard State and local health status profiles for Hispanic/Latino communities.
• Collaborate with church groups, media sources, public figures, and leaders of multidisciplinary professional associations to inform the American public regarding Hispanic/Latino health data issues.
• HHS should undertake activities, which would improve existing sources of health data, such as: enhancing cooperative efforts with the States in recording vital statistics, incorporating specific racial/ethnic identifiers in databases, and oversampling selected minorities in national surveys. Furthermore, HHS should support innovative uses of currently available data consistent with the Privacy Act and confidentiality constraints. Analyses such as cross-comparisons from different data sets and specialized studies should be encouraged because they can contribute to understanding the health status and needs of minority populations.
• Assign high priority to cooperative efforts between HHS and the States directed at developing standardized Hispanic identifiers in vital statistics records (death, birth, marriage and divorce certificates).
• Require all HHS agencies that collect health data from individuals to include racial and ethnic identifiers, as defined by OMB. Where possible and desirable, further breakdown within racial and ethnic categories should be recorded, e.g., national origin of Hispanics and Asian/Pacific Islanders.
• Maintain specific racial/ethnic identifiers when processing original data. For those data collected cooperatively from the States by agencies such as CDC and NCHS, efforts should be increased to overcome barriers to obtaining data with standardized racial/ethnic identifiers.
• PHS should publicize and reissue the current Standards for the Collection and Analysis of Racial and Ethnic Data in Federal Agencies (OMB Statistical Policy Directive 15). The standards outline a minimum of racial and ethnic categories and definitions required for use in all Federal data collection activities which include race items.
• PHS should develop and encourage the use of a supplemental set of standards for classifying racial and ethnic subpopulations (Mexican-American, Chinese, etc.) for use in appropriate PHS data activities.
• CDC/NCHS should develop procedures to promote uniform recording, coding and analysis of vital statistics data on additional racial and ethnic minority populations and subpopulations in the U.S. Building on the success achieved in the Hispanic area, NCHS should encourage all States to adopt similar reporting and coding policies for Asian and Pacific Islander vital events, and should follow as closely as possible the eight Asian and Pacific Islander subpopulation categories used in the 1990 census.
• IHS, in collaboration with NCHS, should explore with appropriate States the potential for adding information on principal Indian Tribe or Alaska village on the birth and death certificates of appropriate States.
• The OMB standard item on race and ethnicity should be included in all uniform health data sets developed or sponsored by PHS agencies.
• All PHS agencies should examine existing and planned program management data systems, whether for research, training or services program administration, for their potential to provide improved data on minority groups. For data systems which do not include information on race and ethnicity, the standard racial and ethnic reporting categories should be incorporated into the next planned revision of the respective system. This Initiative should be monitored through the OMB clearance process.
• Include Hispanic/Latino and Hispanic/Latino subgroup identifiers in all surveys and forms, and provide for adequate sample sizes for detailed analysis to establish new baselines and subobjectives for Healthy People 2000.
• Include Hispanic/Latino and Hispanic/Latino subgroup identifiers in all surveys and forms (e.g., birth and death certificates, patient discharge forms, and forms from primary and ambulatory care clinics). Analysis and dissemination should be subgroup specific for State and local communities with a significant (5 percent or greater) Hispanic/Latino population.
• Enforce OMB Directive 15 and Public Law 94-311 among Federal agencies. Educate Federal agencies about the use of OMB Directive 15 for the inclusion of Hispanics/Latinos (and Hispanic/Latino subgroups) in data systems, and in federally funded intramural and extramural research programs.
• Develop a clear definition of the term "Hispanic/Latino" incorporating the concept of subgroup populations, to be uniformly implemented in county, State and Federal health department and agency data collection and analysis activities.
• The pertinent HHS studies that collect health data, including the Center for Substance Abuse Prevention's "National Household Survey" and "National High School Seniors Survey (should) be modified to include data on specific Asian and Pacific Islander groups.
• Strengthen and expand cooperative efforts to train personnel to complete vital statistics records accurately (particularly with regard to correct coding of causes of death and racial/ethnic identifying items).
• Establish a mechanism to evaluate the quality of information on death certificates to determine if guidelines for completing the items on the certificate are followed.
• Develop mechanisms for matching individual records from among government data sets, within and between Departments, for health and statistical research purposes. HHS should encourage and support legislative changes to allow such matching to occur with the appropriate safeguards.
• As a basis for improvement, PHS should develop a review of the literature relating to methods, issues, and findings in the measurement of race and ethnicity in health statistics activities. Based on the literature review, PHS should convene a workshop or conference devoted to issues in, and the development of, a research agenda relating to the measurement, analysis and dissemination of racial and ethnic minority health data.
• CDC/NCHS, in collaboration with OMH, other PHS agencies and the Bureau of the Census, should undertake a program of methodological research into issues associated with the measurement of race and ethnicity in surveys and research.
• PHS should implement a strategy for developing data on racial and ethnic minority populations and subpopulations which consists of several approaches--improving vital statistics, oversampling in national surveys where feasible, conducting follow-up and dual frame type sampling approaches for special surveys, and sponsoring targeted studies for developing data on subpopulations where oversampling is not feasible or cost effective.
• CDC/NCHS should continue its evaluation of the quality of reporting of race and ethnicity in the National Vital Statistics program as a basis for improvements in these areas. In particular, CDC/NCHS should work with IHS to improve the accuracy of American Indian race reporting on death certificates.
• NCHS should evaluate the quality and completeness of racial and ethnic data obtained from surveys based on health records, and develop recommendations relating to more accurate, complete and detailed information on race and ethnicity in health record-based surveys.
• PHS should support methodological studies on issues associated with the collection, analysis and dissemination of data on minority populations. In addition to general methodological issues, attention should be directed to language and cultural factors, as well as health status and health care issues unique to certain minority subpopulations.
• NCHS should develop a monograph focusing on guidelines and approaches to small area analysis using national data sets as well as more localized approaches. This monograph should include methodological research on health status measures and indicators for minority populations.
• Employ culturally and linguistically appropriate interviewing techniques at all times when conducting surveys on Hispanic/Latino health issues. For example, dependence on telephone interviews is not appropriate for Hispanic/Latino communities with high rates of telephone non-coverage.
• Develop incentives to increase the quality and quantity of Hispanic/Latino health databases. Review data sets continuously for inconsistencies; errors in reporting, coding and keying; and other issues that affect quality. Development plans for databases should include financial, technical and training resources for establishment and maintenance of quality control programs.
• Develop standardized forms for data collection on Hispanics/Latinos.
• HHS should undertake activities which would improve existing sources of health data, such as: enhancing cooperative efforts with the States in recording vital statistics, incorporating specific racial/ethnic identifiers in databases, and oversampling selected minorities in national surveys. Furthermore, HHS should support innovative uses of currently available data consistent with the Privacy Act and confidentiality constraints. Analyses such as cross-comparisons from different data sets and specialized studies should be encouraged because they can contribute to understanding the health status and needs of minority populations.
• Oversample selected minorities in national surveys of health indicators or conduct targeted studies on minority health problems, as appropriate.
• PHS should implement a strategy for developing data on racial and ethnic minority populations and subpopulations which consists of several approaches--improving vital statistics, oversampling in national surveys where feasible, conducting follow-up and dual frame type sampling approaches for special surveys, and sponsoring targeted studies for developing data on subpopulations where oversampling is not feasible or cost effective.
• Oversampling for racial and ethnic minorities should be considered in the planning of all major recurring surveys sponsored by agencies of the PHS. Specifically, the National Health Interview Survey, the primary source of national data on self-reported health status, illness, disability and use of health care in the U.S. should oversample blacks and Hispanics in greater numbers than is currently done.
• In the planned sample redesign of the National Health Interview Survey scheduled for 1996, attention should be directed to opportunities for oversampling Asian or Pacific Islanders and American Indians or Alaska Natives. If this is not feasible, NCHS should explore other methods of increasing the availability of data for these minority populations. Other potential survey candidates for oversampling opportunities (for Hispanics and Asians) include the planned third cycle of the National Medical Expenditure Survey, future cycles of NHANES, the National Survey of Family Growth and the National Health Care Survey.
• Where oversampling is not feasible because of small population sizes or other issues, consideration should be given to the initiation of special surveys based on follow back approaches, special sampling frames and other augmentation approaches using methods comparable to national surveys which would support reliable estimates for minority populations and subpopulations. Research should also be directed at the development of more efficient methods for sampling minority populations.
• PHS should support targeted, smaller scale surveys and studies to develop data for minority populations and, especially, subpopulations. For most smaller minority subpopulations, this approach should be the primary method for data development. Such studies should employ measurement approaches which will make them comparable to national estimates for the general population. To support these studies, the NCHS Disadvantaged Minority Health Improvement Grant Program should be supported at an adequate level.
• While the NCHS Disadvantaged Minority Health Improvement Grant Program will be the focal point for support of targeted minority health data development efforts, all PHS agencies supporting epidemiological, behavioral and health services research through extramural grants to individuals, institutions and centers should support minority data development activities through these mechanisms. To promote policy coordination, OMH should review all extramural research grant solicitations dealing with minority health issues.
• Feasibility beyond National level questionable
• Include consideration of the heterogeneity of the Hispanic/Latino population in all county, State, and Federal health department data collection and research designs. Oversampling has been identified as a feasible method for highly concentrated Hispanic/Latino subgroups; develop other survey methodologies to collect data for geographically dispersed Hispanic/Latino subgroups.
• HHS should undertake activities, which would improve existing sources of health data, such as: enhancing cooperative efforts with the States in recording vital statistics, incorporating specific racial/ethnic identifiers in databases, and oversampling selected minorities in national surveys. Furthermore, HHS should support innovative uses of currently available data consistent with the Privacy Act and confidentiality constraints. Analyses such as cross-comparisons from different data sets and specialized studies should be encouraged because they can contribute to understanding the health status and needs of minority populations.
• To assist in fully understanding the causes of racial and ethnic disparities in health status and health care access and use, PHS agencies should include additional questions on social and economic factors as well as race and ethnicity in major surveys, and expand their analyses of existing data relating to the role of socioeconomic factors. Among the factors to be included are education, occupation, income, health insurance and related economic and program participation information.
• In addition to social and economic factors, behavioral factors are essential to a fuller understanding of the causes of racial disparities in health. Accordingly, PHS agencies should expand the collection and analysis of data on individual risk factor behavior, e.g., cigarette smoking, in major surveys.
• To better assess health status and health care access issues in diverse minority populations, PHS agencies should include selected questions on acculturation, nativity and recency of immigration in appropriate surveys and studies and include such factors in analyses. In addition, PHS agencies should support further research into the relationship between those issues and minority health.
• In developing future plans for the family of provider-based surveys which comprise the National Health Care Survey, NCHS should examine the potential for improved and expanded data collection, analysis and dissemination of information on minority populations.
• NCHS, in collaboration with OMH and ODPHP, should develop a plan to address minority data needs associated with Healthy People 2000. Data gaps relating to monitoring progress toward the minority health objectives included in Healthy People 2000, as well as data gaps which impeded the development of minority health objectives should be addressed.
• All agencies of the Public Health Service should examine the potential for expanded data collection, analysis and dissemination of minority health data from existing data systems, whether surveys, surveillance activities, epidemiological studies, registries, or other activities. Specifically:
• HRSA should develop a strategy to improve data on the numbers, geographic distribution and practice characteristics of minority health personnel. The first step would involve the determination of which occupations to focus on, followed by the development of occupation-specific plans.
• HRSA and AHCPR should support the development of data on health care access and delivery issues for specific racial and ethnic minority groups, including where they receive care, the types of personnel providing care and the effect of the health care provided.
• HRSA should examine the potential for improved information on minority status in its service recipient populations, its health professions training support programs, health resource development programs, and health personnel data activities.
• All PHS agencies should examine existing and planned program management data systems, whether for research, training or services program administration, for their potential to provide improved data on minority groups. For data systems which do not include information on race and ethnicity, the standard racial and ethnic reporting categories should be incorporated into the next planned revision of the respective system. This Initiative should be monitored through the OMB clearance process.
• OMH should work with the Health Care Financing Administration and the Social Security Administration to promote the development of data on minorities in its enrollee and beneficiary populations.
• Ensure that sociocultural data be collected, so that analysis and interpretation of Hispanic/Latino health data can be placed in the context of larger social issues.
• Ensure that sociocultural data are collected and that appropriate statistical methodologies and interpretation of these data are used. Analysis and interpretation of Hispanic/Latino health data should be placed in the context of larger social issues to ensure that "blaming the victim" is avoided and to allow identification of social factors that contribute directly and indirectly to the production and treatment of disease.
• Starting immediately, review existing Healthy People 2000 objectives and establish subobjectives to target Hispanics/Latinos. Provide baseline data for Hispanics/Latinos for these subobjectives at the Federal, State and local levels.
• There is an unacceptable lack of basic health statistics regarding substance abuse, mental health and primary health care for Asian and Pacific Islander populations. The absence of this crucial public health information creates enormous problems in developing health promotion and treatment programs at the local, State and national levels. Further, the lack of incidence and prevalence data place Asian and Pacific Islanders at a tremendous disadvantage in pursuing grants and other resources from the public and private sectors. HHS (should) take immediate corrective action by implementing a systematic action plan to gather the necessary data. Short-term data gathering projects should be implemented in each of the major Asian and Pacific Islander population centers in at least six States.
• The pertinent HHS studies that collect health data, including the Center for Substance Abuse Prevention's National Household Survey and National High School Seniors Survey [should] be modified to include data on specific Asian and Pacific Islander groups.
• HHS (should) take immediate corrective action to revise the Healthy People 2000 strategy in order to effectively address the needs of Asian and Pacific Islanders.
• HHS should collect detailed surveillance data on the incidence and prevalence of HIV/AIDS and STDs among Asian and Pacific Islanders in the continental U.S., Alaska, Hawaii, and the Pacific Islands.
• HHS (should) add the Pacific Islands to the Healthy People 2000 strategy document including a full description of the needs (with baseline data) and corresponding objectives.
• HHS should undertake activities which would improve existing sources of health data, such as: enhancing cooperative efforts with the States in recording vital statistics, incorporating specific racial/ethnic identifiers in databases, and oversampling selected minorities in national surveys. Furthermore, HHS should support innovative uses of currently available data consistent with the Privacy Act and confidentiality constraints. Analyses such as cross-comparisons from different data sets and specialized studies should be encouraged because they can contribute to understanding the health status and needs of minority populations.
• Work with the Bureau of the Census to improve health-related, minority-specific data collection for the 1990 census.
• Investigate, in the absence of legislation permitting data linkage across HHS agencies, mechanisms whereby the minority-specific, health-related data collected by each agency can be analyzed and published.
• PHS should support methodological studies on issues associated with the collection, analysis and dissemination of data on minority populations. In addition to general methodological issues, attention should be directed to language and cultural factors, as well as health status and health care issues unique to certain minority subpopulations.
• Analyze and highlight minority health issues, especially in the six health priority areas, that result from improved minority identifiers in data collection.
• CDC/NCHS should combine several years of data from the National Health Interview Survey, the National Hospital Discharge Survey, the National Ambulatory Medical Care survey, the National Vital Statistics System and other data sources to develop and publish periodic comprehensive profiles of the health status and health care use of minority populations in the U.S.
• To promote wider analysis of minority health data, PHS agencies should develop aggressive public use data tape release programs, including grant and contract support for data analysis as well as periodic data users conferences.
• OMH should develop approaches to promoting wider analysis and availability of existing minority data within PHS. Approaches might include the establishment of an internal statistical capability, a statistical resource contractor, a task order contract or other alternatives.
• OMH should publicize and update the Directory of PHS Minority Health Data Resources on a periodic basis. The Directory was developed by the Task Force as a central reference guide to existing and planned data sources in minority health.
• NCHS should compile and disseminate State and community level health data with special attention to minority data and Healthy People 2000.
• NCHS should develop a monograph focusing on guidelines and approaches to small area analysis using national data sets as well as more localized approaches. This monograph should include methodological research on health status measures and indicators for minority populations.
• CDC/NCHS, in collaboration with OMH, should develop and disseminate a periodic report on the health of minorities similar in concept to Health U.S. and Mental Health: U.S.
• OMH should promote the improved dissemination of minority data to appropriate audiences through such existing PHS dissemination mechanisms as Public Health Reports, MMWR, clearinghouses and related approaches.
• Facilitate public access to Hispanic/Latino health data reports and systems. Federal, State, and local health departments should identify existing data sets that can be used to assess the health status of Hispanics/Latinos and should determine the accessibility of these data sets to researchers.
• Provide regular Hispanic/Latino health data updates in publicly funded electronic newsletters, bulletin boards and other communication activities.
• Increase the use of Hispanic/Latino newsletters, radio and other effective media mechanisms as tools for disseminating data information.
• Encourage researchers to report back to Hispanic/Latino communities regarding their research findings before public dissemination of results, including publication and presentation at scientific meetings.
• Establish local, State, regional and national Hispanic/Latino health data clearinghouses.
• Develop publicly accessible computerized systems for retrieval of Hispanic/Latino health data.
• Establish cooperative agreement mechanisms to develop easily accessible Hispanic/Latino health data retrieval computer programs.
• Prepare user-friendly summary reports regarding Hispanic/Latino health on a regular basis and distribute them to local elected officials and community leaders.
• Develop summary reports on Hispanic/Latino health for dissemination for policy analysts, program planners, elected officials, and community and political leaders.
• Increase quantitative skills of Hispanic/Latino undergraduates to expand the pool of Latino researchers with the skills necessary to conduct research on Hispanic/Latino health issues.
• Require statistical agencies of the Federal Government to provide technical assistance to State and local agencies for the development of data collection instruments and the completion of instruments according to high standards of quality. Additionally, software to assist in this process should be developed and provided.
• Develop programs for Hispanic/Latino community-based organizations to enhance their skills in Hispanic/Latino health data collection, analysis and interpretation.
• Enforce OMB Directive 15 and Public Law 94-311 among Federal agencies. Educate Federal agencies about the use of OMB Directive 15 for the inclusion of Hispanics/Latinos (and Hispanic/Latino subgroups) in data systems, and in federally funded intramural and extramural research programs.
• Increase Hispanic/Latino representation in the design, implementation, analysis and dissemination of health assessment and health monitoring data systems, and in funding decisions affecting these systems, including the identification of health indicators specific to Hispanics/Latinos.
• Increase Hispanic/Latino representation in the design, implementation, analysis, and dissemination of health assessment and health monitoring data systems and in funding decisions affecting these systems. This increased representation is needed in Federal, State and local departments and agencies, community-based organizations, colleges and universities, and other private research entities.
• Increase Hispanic/Latino membership in committees, councils and commissions appointed by county, State, and Federal health departments; agency administrators; State and Federal legislators; and Governors to monitor data collection, analysis, interpretation and dissemination.
• Tie the release of Federal funds to States to the collection and reporting of Hispanic/Latino ethnicity. Data collection and reporting should include both documented and undocumented Hispanics/Latinos.
• Allocate funds in Federal, State and local health programs to pay for data collection, analysis and dissemination of Hispanic/Latino health data so that progress in improving Hispanic/Latino health status, and ultimately the health status of the Nation, can be tracked. Government agencies that use these data, but do not produce data, should share in the expenses of data collection, analysis and dissemination.
• Create a Hispanic/Latino advisory board to the Secretary of Health and Human Services, State departments of health, and philanthropic foundations to oversee the implementation of the recommendations from the National Workshop and Regional Health Meetings of the Surgeon General's Hispanic/Latino Health Initiative.
• Include Hispanics/Latinos in interdisciplinary work groups, which should plan for research and data collection, evaluate data collection instruments, ensure that collected data are inclusive and usable, and assist in the interpretation and dissemination of these data. These work groups should include multiethnic individuals from the community to be studied, community-based organizations, health care professionals, advocates, and researchers.
• Establish regional Hispanic/Latino health coalitions to monitor implementation of the strategies developed during the national and regional workshops of the Surgeon General's Hispanic/Latino Health Initiative.
• The Secretary (should) establish an Asian and Pacific Islander Work Group on Health Data Needs to advise the Secretary on these issues, and assist in monitoring the progress of the Department in this area. This Work Group will be a subset of the Secretary's Asian and Pacific Islander Task Force on Health and Human Services.
• HHS (should) take immediate corrective action to revise the "Healthy People 2000" strategy in order to effectively address the needs of Asian and Pacific Islanders.
• The Secretary (should) establish an Asian and Pacific Islander Work Group on the "Healthy People 2000" objectives to work with the Secretary in revising the "Healthy People 2000" objectives to better address the needs of Asian and Pacific Islanders. In addition to expanding the existing provisions for Asian and Pacific Islanders to a comprehensive array of objectives (with baseline data), the revisions must establish an action plan to implement those new objectives. This Work Group will be a subset of the Secretary's Asian and Pacific Islander Task Force on Health and Human Services.
• HHS (should) add the Pacific Islands to the "Healthy People 2000" strategy document including a full description of the needs (with baseline data) and corresponding objectives.
• Conduct a national conference--cosponsored by the National Center for Health Statistics, other parts of the Centers for Disease Control and Prevention, the Commerce Department, the Department of Justice, the Environmental Protection Agency, and other Federal agencies--to improve the coordination of data collection, analysis and dissemination, with the goal being to reduce the burden of voluntary and mandatory reporting by the States, and to improve the consistency of reporting of racial/ethnic origin. Recommendations based on the findings from the 1993 PHS Task Force on State and Community Data should be used to help develop the agenda for the conference. Among the products of this conference should be guidelines for comparability and plans for providing, on a continuous basis, technical assistance and resources to State and local agencies responsible for data collection. This conference should take place by 1995 at the latest to ensure that tracking of Healthy People 2000 objectives can be based on consistent and accurate data.
• Encourage researchers to report back to Hispanic/Latino communities regarding their research findings before public dissemination of results, including publication and presentation at scientific meetings.
• Promote needs assessment at the local level to empower communities to prioritize their health needs and seek funding accordingly.
• Identify and develop funding mechanisms for survey methodologies to study Hispanic/Latino subgroups. Additional funds should be allocated to the National Center for Health Statistics' Minority Health Statistics Grant program and census survey research programs to support targeted research to develop appropriate, culturally competent and linguistically sensitive survey methodology to study subgroups of Hispanics/Latinos. Consideration should be given to the undocumented and recent immigrants.
• HHS should collect detailed surveillance data on the incidence and prevalence of HIV/AIDS and STDs among Asian and Pacific Islanders in the continental U.S., Alaska, Hawaii and the Pacific Islands.
• Establish a balance between the data needs for research and policy making and the burden on the health care provider to collect information in addition to providing services.
• Identify and develop funding mechanisms for survey methodologies to study Hispanic/Latino subgroups. Additional funds should be allocated to the National Center for Health Statistics' Minority Health Statistics Grant program and census survey research programs to support targeted research to develop appropriate, culturally competent and linguistically sensitive survey methodology to study subgroups of Hispanics/Latinos. Consideration should be given to the undocumented and recent immigrants.
• Develop methodologies and programs for educating public and private entities regarding the need for scientifically valid Hispanic/Latino health data.

Appendix E Office of Management and Budget Directive No. 15

Race and Ethnic Standards for Federal Statistics and Administrative Reporting
(adopted on May 12, 1977)

This Directive provides standard classifications for record keeping, collection, and presentation of data on race and ethnicity in Federal program administrative reporting and statistical activities. These classifications should not be interpreted as being scientific or anthropological in nature, nor should they be viewed as determinants of eligibility for participation in any Federal program. They have been developed in response to needs expressed by both the executive branch and the Congress to provide for the collection and use of compatible, nonduplicated, exchangeable racial and ethnic data by Federal agencies.

1. Definitions

The basic racial and ethnic categories for Federal statistics and program administrative reporting are defined as follows:

a. American Indian or Alaskan Native. A person having origins in any of the original peoples

of North America, and who maintains cultural identification through tribal affiliation or community recognition.

b. Asian or Pacific Islander. A person having origins in any of the original peoples of the Far East, Southeast Asia, the Indian subcontinent, or the Pacific Islands. This area includes, for example, China, India, Japan, Korea, the Philippine Islands, and Samoa.

c. Black. A person having origins in any of the black racial groups of Africa.

d. Hispanic. A person of Mexican, Puerto Rican, Cuban, Central or South American or other Spanish culture or origin, regardless of race.

e. White. A person having origins in any of the original peoples of Europe, North Africa, or the Middle East.

2. Utilization for Record Keeping and Reporting

To provide flexibility, it is preferable to collect data on race and ethnicity separately. If separate race and ethnic categories are used, the minimum designations are:

a. Race
-- American Indian or Alaskan Native

-- Asian or Pacific Islander
-- Black
-- White

b. Ethnicity

-- Hispanic origin
-- Not of Hispanic origin

When race and ethnicity are collected separately, the number of White and Black persons who are Hispanic must be identifiable, and capable of being reported in that category.

If a combined format is used to collect racial and ethnic data, the minimum acceptable categories are:

-- American Indian or Alaskan Native
-- Asian or Pacific Islander
-- Black, not of Hispanic origin
-- Hispanic
-- White, not of Hispanic origin.

The category which most closely reflects the individual's recognition in his community should be used for purposes of reporting on persons who are of mixed racial and/or ethnic origins.

In no case should the provisions of this Directive be construed to limit the collection of data to the categories described above. However, any reporting required which uses more detail shall be organized in such a way that the additional categories can be aggregated into these basic racial/ethnic categories.

The minimum standard collection categories shall be utilized for reporting as follows:

a. Civil rights compliance reporting. The categories specified above will be used by all agencies in either the separate or combined format for civil rights compliance reporting and equal employment reporting for both the public and private sectors and for all levels of government. Any variation requiring less detailed data or data which cannot be aggregated into the basic categories will have to be specifically approved by the Office of Management and Budget (OMB) for executive agencies. More detailed reporting which can be aggregated to the basic categories may be used at the agencies' discretion.

b. General program administrative and grant reporting. Whenever an agency subject to this Directive issues new or revised administrative reporting or record keeping requirements which include racial or ethnic data, the agency will use the race and ethnicity categories described above. A variance can be specifically requested from OMB, but such a variance will be granted only if the agency can demonstrate that it is not reasonable for the primary reporter to determine the racial or ethnic background in terms of the specified categories, and that such determination is not critical to the administration of the program in question, or if the specific program is directed to only one or a limited number of race and ethnicity groups, e.g., Indian tribal activities.

c. Statistical reporting. The categories described in this Directive will be used at a minimum for federally sponsored statistical data collection where race and/or ethnicity is required, except when: the collection involves a sample of such size that the data on the smaller categories would be unreliable, or when the collection effort focuses on a specific racial or ethnic group. A repetitive survey shall be deemed to have an adequate sample size if the racial and ethnic data can be reliably aggregated on a biennial basis. Any other variation will have to be specifically authorized by OMB through the reports clearance process. In those cases where the data collection is not subject to the reports clearance process, a direct request for a variance should be made to OMB.

3. Effective Date

The provisions of this Directive are effective immediately for all new and revised record keeping or reporting requirements containing racial and/or ethnic information. All existing record keeping or reporting requirements shall be made consistent with this Directive at the time they are submitted for extension, or not later than January 1, 1980.

4. Presentation of Race and Ethnic Data

Displays of racial and ethnic compliance and statistical data will use the category designations listed above. The designation "nonwhite" is not acceptable for use in the presentation of Federal Government data. It is not to be used in any publication of compliance or statistical data or in the text of any compliance or statistical report.

In cases where the above designations are considered inappropriate for presentation of statistical data on particular programs or for particular regional areas, the sponsoring agency may use:

(1) The designations "Black and Other Races" or "All Other Races," as collective descriptions of minority races when the most summary distinction between the majority and minority races is appropriate;

(2) The designations "White," "Black,"and "All Other Races" when the distinction among the majority race, the principal minority race and other races is appropriate; or

(3) The designation of a particular minority race or races, and the inclusion of "Whites" with "All Other Races," if such a collective description is appropriate.

In displaying detailed information which represents a combination of race and ethnicity, the description of the data being displayed must clearly indicate that both bases of classification are being used.

When the primary focus of a statistical report is on two or more specific identifiable groups in the population, one or more of which is racial or ethnic, it is acceptable to display data for each of the particular groups separately and to describe data relating to the remainder of the population by an appropriate collective description.

Appendix F Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity

(adopted on October 30, 1997)

This classification provides a minimum standard for maintaining, collecting, and presenting data on race and ethnicity for all Federal reporting purposes. The categories in this classification are social-political constructs and should not be interpreted as being scientific or anthropological in nature. They are not to be used as determinants of eligibility for participation in any Federal program. The standards have been developed to provide a common language for uniformity and comparability in the collection and use of data on race and ethnicity by Federal agencies.

The standards have five categories for data on race: American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, and White. There are two categories for data on ethnicity: "Hispanic or Latino," and "Not Hispanic or Latino."

1. Categories and Definitions

The minimum categories for data on race and ethnicity for Federal statistics, program administrative reporting, and civil rights compliance reporting are defined as follows:

-- American Indian or Alaska Native. A person having origins in any of the original peoples of North and South America (including Central America), and who maintains tribal affiliation or community attachment.

-- Asian. A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.

-- Black or African American. A person having origins in any of the black racial groups of Africa. Terms such as "Haitian" or "Negro" can be used in addition to "Black or African American."

-- Hispanic or Latino. A person of Cuban, Mexican, Puerto Rican, Cuban, South or Central American, or other Spanish culture or origin, regardless of race. The term, "Spanish origin," can be used in addition to "Hispanic or Latino."

-- Native Hawaiian or Other Pacific Islander. A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.

-- White. A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.

Respondents shall be offered the option of selecting one or more racial designations. Recommended forms for the instruction accompanying the multiple response question are "Mark one or more" and "Select one or more."

2. Data Formats

The standards provide two formats that may be used for data on race and ethnicity. Self-reporting or self-identification using two separate questions is the preferred method for collecting data on race and ethnicity. In situations where self-reporting is not practicable or feasible, the combined format may be used.

In no case shall the provisions of the standards be construed to limit the collection of data to the categories described above. The collection of greater detail is encouraged; however, any collection that uses more detail shall be organized in such a way that the additional categories can be aggregated into these minimum categories for data on race and ethnicity.

With respect to tabulation, the procedures used by Federal agencies shall result in the production of as much detailed information on race and ethnicity as possible. However, Federal agencies shall not present data on detailed categories if doing so would compromise data quality or confidentiality standards.

a. Two-question format

To provide flexibility and ensure data quality, separate questions shall be used wherever feasible for reporting race and ethnicity. When race and ethnicity are collected separately, ethnicity shall be collected first. If race and ethnicity are collected separately, the minimum designations are:

Race:

-- American Indian or Alaska Native

-- Asian

-- Black or African American

-- Native Hawaiian or Other Pacific Islander

-- White

Ethnicity:

-- Hispanic or Latino

-- Not Hispanic or Latino

When data on race and ethnicity are collected separately, provision shall be made to report the number of respondents in each racial category who are Hispanic or Latino.

When aggregate data are presented, data producers shall provide the number of respondents who marked (or selected) only one category, separately for each of the five racial categories. In addition to these numbers, data producers are strongly encouraged to provide the detailed distributions, including all possible combinations, of multiple responses to the race question. If data on multiple responses are collapsed, at a minimum the total number of respondents reporting "more than one race" shall be made available.

b. Combined format

The combined format may be used, if necessary, for observer-collected data on race and ethnicity. Both race (including multiple responses) and ethnicity shall be collected when appropriate and feasible, although the selection of one category in the combined format is acceptable. If a combined format is used, there are six minimum categories:

-- American Indian or Alaska Native

-- Asian

-- Black or African American

-- Hispanic or Latino

-- Native Hawaiian or Other Pacific Islander

-- White

When aggregate data are presented, data producers shall provide the number of respondents who marked (or selected) only one category, separately for each of the six categories. In addition to these numbers, data producers are strongly encouraged to provide the detailed distributions, including all possible combinations, of multiple responses. In cases where data on multiple responses are collapsed, the total number of respondents reporting "Hispanic or Latino and one or more races" and the total number of respondents reporting "more than one race" (regardless of ethnicity) shall be provided.

3. Use of the Standards for Record Keeping and Reporting

The minimum standard categories shall be used for reporting as follows:

a. Statistical reporting

These standards shall be used at a minimum for all federally sponsored statistical data collections that include data on race and/or ethnicity, except when the collection involves a sample of such size that the data on the smaller categories would be unreliable, or when the collection effort focuses on a specific racial or ethnic group. Any other variation will have to be specifically authorized by the Office of Management and Budget (OMB) through the information collection clearance process. In those cases where the data collection is not subject to the information collection clearance process, a direct request for a variance shall be made to OMB.

b. General program administrative and grant reporting

These standards shall be used for all Federal administrative reporting or record keeping requirements that include data on race and ethnicity. Agencies that cannot follow these standards must request a variance from OMB. Variances will be considered if the agency can demonstrate that it is not reasonable for the primary reporter to determine racial or ethnic background in terms of the specified categories, that determination of racial or ethnic background is not critical to the administration of the program in question, or that the specific program is directed to only one or a limited number of racial or ethnic groups.

c. Civil rights and other compliance reporting

These standards shall be used by all Federal agencies in either the separate or combined format for civil rights and other compliance reporting from the public and private sectors and all levels of government. Any variation requiring less detailed data or data which cannot be aggregated into the basic categories must be specifically approved by OMB for executive agencies. More detailed reporting which can be aggregated to the basic categories may be used at the agencies' discretion.

4. Presentation of Data on Race and Ethnicity

Displays of statistical, administrative, and compliance data on race and ethnicity shall use the categories listed above. The term "nonwhite" is not acceptable for use in the presentation of Federal Government data. It shall not be used in any publication or in the text of any report.

In cases where the standard categories are considered inappropriate for presentation of data on particular programs or for particular regional areas, the sponsoring agency may use:

a. The designations "Black or African American and Other Races" or "All Other Races" as collective descriptions of minority races when the most summary distinction between the majority and minority races is appropriate;

b. The designations "White," "Black or African American," and "All Other Races" when the distinction among the majority race, the principal minority race, and other races is appropriate; or

c. The designation of a particular minority race or races, and the inclusion of "Whites" with "All Other Races" when such a collective description is appropriate.

In displaying detailed information that represents a combination of race and ethnicity, the description of the data being displayed shall clearly indicate that both bases of classification are being used.

When the primary focus of a report is on two or more specific identifiable groups in the population, one or more of which is racial or ethnic, it is acceptable to display data for each of the particular groups separately and to describe data relating to the remainder of the population by an appropriate collective description.

5. Effective Date

The provisions of these standards are effective immediately for all new and revised record keeping or reporting requirements that include racial and/or ethnic information. All existing record keeping or reporting requirements shall be made consistent with these standards at the time they are submitted for extension, or not later than January 1, 2003.

Appendix G Policy Statement on Inclusion of Race and Ethnicity in HHS Data Collection Activities

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).

/s/

Donna E. Shalala

Attachments

cc:

Co-chairpersons

HHS Data Council

Policy Statement on Inclusion of Race and Ethnicity

in HHS Data Collection Activities

Summary

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

A. Background

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.