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:

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

  • 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.

    • Compare to commentary on recommendation immediately above

  • 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.

    • Ongoing and continuous need

  • 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.

    • Long term

  • Fund county, State and Federal Hispanic/Latino health research and data analysis training centers.

    • Ongoing and continuous need

  • Provide support for local, State, regional and national Hispanic/Latino health data forums, conferences and workshops.

    • Short term

  • Develop funding incentives to increase the use of Hispanic/Latino health databases by public and private entities.

    • 2. Infrastructure

    1992: PHS Task Force on Minority Health Data

    Ongoing and continuous need

  • 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.

    • Short term

  • 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.

    • Short term

  • 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.

    • Short term

  • 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.

    • Short term

  • 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.

    • 3. Policy and Legislation

    1985: Task Force on Black and Minority Health:

    Ongoing and continuous need

  • 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.

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

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

  • 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.

    • No authority

  • 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.

    • Compare to commentary on two recommendations immediately above

  • 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.

    • Short term

  • 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.

    • Ongoing and continuous need

  • 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.

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

    Long term

  • 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.

    • Ongoing and continuing

    Vague; but improvements are ongoing and continuing

  • Set timelines for improving data collection for Hispanics/Latinos.

    • Vague; but improvements are ongoing and continuing

  • 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.

    • Short term

  • 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.

    • Clarification of intent and status needed

  • 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.

    • Short term

  • 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.

    • 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

  • 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.

    • Ongoing and continuing effort

  • 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).

    • Ongoing and continuous effort

  • 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).

    • Ongoing and continuous need (where feasible)

  • 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.

    • Completed 1990

    Feasibility for 2000 questionable

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

    • Completed (NCHS linked file of infant births and deaths)

  • 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.

    • 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

  • 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.

    • Refer to IHS

  • 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.

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

    Ongoing and continuous effort

  • 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.

    • Short term

  • 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.

    • Ongoing

  • 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.

    • 5. OMB/Identifiers/Subgroups

    1985: Task Force on Black and Minority Health

    Ongoing and continuing effort

  • 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.

    • Ongoing and continuing effort

    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).

    • Short term

  • 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.

    • Ongoing and continuing effort (where feasible)

  • 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.

    • 1992: PHS Task Force on Minority Health Data

    Ongoing and continuous need

  • 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.

    • Long term

  • 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.

    • Completed and continuing effort

  • 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.

    • Refer to IHS

  • 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.

    • Short term where feasible without retooling

  • The OMB standard item on race and ethnicity should be included in all uniform health data sets developed or sponsored by PHS agencies.

    • Short term where feasible without retooling

  • 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.

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

    Ongoing and continuous need

  • 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.

    • Short term where feasible; partially ongoing and continuous efforts

  • 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.

    • Short term

  • 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.

    • Appears to be not feasible

  • 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.

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

    (12/17/93 memo to Peter Edelman)

    Refer to NIDA

  • 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.

    • 6. Evaluation/Methodology/Quality

    1985: Task Force on Black and Minority Health

    Ongoing and continuing effort

  • 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).

    • Ongoing and continuing effort

  • 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.

    • Ongoing and continuous need (see Legislature section)

  • 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.

    • 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.

  • 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.

    • Ongoing and continuing effort

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

  • 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.

    • Ongoing and continuous need

  • 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.

    • Ongoing and continuing effort

  • 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.

    • Ongoing and continuing effort

  • 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.

    • Ongoing and continuous need

  • 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.

    • Short term

    Address previous and current efforts; feasibility

  • 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.

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

    Short term (refer to Section 2, Infrastructure)

  • 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.

    • Ongoing and continuing effort

  • 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.

    • Ongoing and continuous need (where feasible)

  • Develop standardized forms for data collection on Hispanics/Latinos.

    • 7. Oversampling or Target Surveys

    1985: Task Force on Black and Minority Health

    Ongoing and continuous need

  • 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.

    • Ongoing and continuous need (See above)

  • Oversample selected minorities in national surveys of health indicators or conduct targeted studies on minority health problems, as appropriate.

    • 1992: PHS Task Force on Minority Health Data

    Ongoing and continuous need

  • 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.

    • Ongoing and continuous need

    Blacks and Hispanics are oversampled in NHIS

  • 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.

    • Short term

    Status?

  • 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.

    • Short term

  • 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.

    • Short term

    Funding addressed in section 2, Infrastructure

  • 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.

    • Long term

  • 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.

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

    Short term

  • 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.

    • 8. Content/Relevance

    1985: Task Force on Black and Minority Health

    Short term

  • 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.

    • 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.

  • 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.

    • Ongoing and continuous need

  • 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.

    • Ongoing and continuous effort

  • 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.

    • Ongoing and continuous effort

  • 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.

    • Ongoing and continuing effort

  • 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.

    • Input needed from each agency

  • 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:

    • -- 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

  • 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.

    • Input needed from HRSA

  • 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.

    • Input needed from HRSA

  • 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.

    • Ongoing and continuous need

  • 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.

    • Ongoing and continuous need

  • 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.

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

    Ongoing and continuous need

  • 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.

    • Ongoing and continuous need

  • 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.

    • Completed

  • 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.

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

    Need input from appropriate program(s)

  • 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.

    • Need input from appropriate program(s)

  • 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.

    • Need input from appropriate program(s)

  • 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.

    • Need input from appropriate program(s)

  • 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.

    • Need input from appropriate program(s)

  • 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.

    • 9. Analysis/Publication/Dissemination

    1985: Task Force on Black and Minority Health

    Short term

  • 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.

    • Completed 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.

    • Ongoing and continuous need

  • 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.

    • 1992: PHS Task Force on Minority Health Data

    Short term

    (See section 6, Methodology)

  • 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.

    • Ongoing

  • Analyze and highlight minority health issues, especially in the six health priority areas, that result from improved minority identifiers in data collection.

    • Short term

  • 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.

    • Ongoing and continuous effort

  • 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.

    • Short term

  • 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.

    • 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.

  • 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.

    • Short term

    Feasible for vital statistics

  • NCHS should compile and disseminate State and community level health data with special attention to minority data and Healthy People 2000.

    • Short term

    (See section 6, Methodology)

  • 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.

    • Short term

    (See section 4, Cooperative Efforts)

  • 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.

    • Ongoing and continuous need

  • 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.

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

    Ongoing (included in other recommendations)

  • 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.

    • Short term

  • Provide regular Hispanic/Latino health data updates in publicly funded electronic newsletters, bulletin boards and other communication activities.

    • Short term

  • Increase the use of Hispanic/Latino newsletters, radio and other effective media mechanisms as tools for disseminating data information.

    • Short term

  • 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.

    • Ongoing

  • Establish local, State, regional and national Hispanic/Latino health data clearinghouses.

    • Short term

  • Develop publicly accessible computerized systems for retrieval of Hispanic/Latino health data.

    • Short term

    (See section 2, Infrastructure)

  • 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.

    • Short term

  • Develop summary reports on Hispanic/Latino health for dissemination for policy analysts, program planners, elected officials, and community and political leaders.

    • 10. Training/Technical Assistance

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

    Ongoing and continuous need

  • 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.

    • Ongoing and continuous need

  • 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.

    • Short term

  • Develop programs for Hispanic/Latino community-based organizations to enhance their skills in Hispanic/Latino health data collection, analysis and interpretation.

    • Short term

    (See Section 5, OMB/Identifiers/Subgroups)

  • 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.

    • 11. Representation

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

    Ongoing and continuous need

  • 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.

    • Ongoing and continuous need

    Feasibility beyond National level questionable

  • 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.

    • Authority questionable

  • 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.

    • Long term

    (See section 2, Infrastructure)

  • 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.

    • Ongoing and continuous need

  • 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.

    • Feasibility in question

  • 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.

    • Short term

  • 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.

    • Authority in question

  • 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.

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

    (12/17/93 memo to Peter Edelman)

    Refer to appropriate program(s)

  • 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.

    • Completed

  • 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.

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

  • 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.

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

  • 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.

    • 12. Other

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

  • 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.

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