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:
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::
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.