Data Collection Preamble

It was not until 1989 that Hispanic/Latino identifiers were included on the standard registration certificates for vital events recommended for use by the States. Although the ability to assess mortality among Hispanics/Latinos has greatly improved, significant gaps in knowledge still exist regarding morbidity, quality of life, and disability in Hispanic/Latino communities. This lack of data has prevented the establishment of adequate baselines and subobjectives for the Healthy People 2000 objectives that target Hispanics/Latinos. Because funding decisions at the Federal, State, and local levels have often been based on the Healthy People 2000 objectives, this lack of data has hindered progress to improving health status of Hispanics/Latinos.

Problems

1. Inadequate inclusion of Hispanics/Latinos in data systems.
2. Lack of data on specific Hispanic/Latino health issues.
3. Limited awareness of and access to local, State, and Federal Hispanic/Latino health databases.
4. Lack of quality, accurate, timely, and culturally sensitive data system design, data collection, and analysis.
5. Duplication and lack of coordination of efforts in health data collection by State and Federal agencies.

Summary of Key Strategies

1. 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."
2. 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 for Hispanics/Latinos.
3. During current 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 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.
4. 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.
5. 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.

Specific Strategies

Key Audiences: Local, State, and Federal administrators and officials.

Representation and Communication

• Develop methodologies and programs for educating public and private entities regarding the need for scientifically valid Hispanic/Latino health data.
• 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.
• 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.
• 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.
• Identify a person in each agency or organization that collects and disseminates data to serve as the principal point of contact for Hispanic/Latino data analysis.
• 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.

Policy

• 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.
• 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.
• 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.
• 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.
• 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 noncoverage.
• 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.
• 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.
• Establish local, State, regional, and national Hispanic/Latino health data clearinghouses.
• Starting immediately, review existing Healthy People 2000 objectives and establish subobjectives to target Hispanics/Latinos. Provide baseline data for Hispanics/Latinos for those subobjectives at the Federal, State, and local levels.
• Develop publicly accessible computerized systems for retrieval of Hispanic/Latino health data.
• 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.
• Enforce OMB Directive l5 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.
• 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.
• 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.
• 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.
• Use existing data systems (e.g., Census Bureau and the National Center for Health Statistics (NCHS)) to establish cooperative agreements with States to develop standard State and local health status profiles for Hispanic/Latino communities.
• Conduct a national conference -- sponsored by the NCHS, other parts of the Centers for Disease Control and Prevention, the Commerce Department, the Department of Education, 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 race/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.

Resources

• 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 standardized forms for data collection on Hispanics/Latinos.
• 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 development of data collection instruments and 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.

Public - Private Partnerships

• Establish cooperative agreement mechanisms to develop easily accessible Hispanic/Latino health data retrieval computer programs.
• Develop funding incentives to increase the use of Hispanic/Latino health databases by public and private entities.
• 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 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.
• 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.

Advocacy

• Prepare user-friendly summary reports regarding Hispanic/Latino health on a regular basis and distribute them to local elected officials and community leaders.
• Collaborate with church groups, media sources, public figures, and leaders of multi-disciplinary professional associations to inform the American public regarding Hispanic/Latino health data issues.
• Develop summary reports on Hispanic/Latino health for dissemination to policy analysts, program planners, elected officials, and community and political leaders.

Legislation

• 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.
• 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.
• 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.