Appendix B
Summary of Data Gaps and Recommendations
Identified in Health Focus Area Work Group Reports
A review was conducted of health focus area reports prepared by the six work groups of the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health. The focus areas are (1) infant mortality; (2) cancer screening and management; (3) cardiovascular disease; (4) prevention of diabetes complications; (5) HIV/AIDS; and (6) child and adult immunizations.
The purpose of the review was to summarize existing data gaps and make recommendations for eliminating those gaps. A list of the reported gaps and the recommendations from each of the reports appears below. Where possible, similar topics are grouped together. The summary is divided into two sections: (1) cross-cutting gaps and recommendations; and (2) report-specific recommendations. In addition, several data gap sections which are not mentioned in the reports are listed.
For reference purposes, the new Federal standards for racial and ethnic data specify that data be reported for a minimum of five categories of race--American Indian or Alaska Native, Asian, black or African American, Native Hawaiian or Other Pacific Islander and white--and two categories of ethnicity--Hispanic or Latino and non-Hispanic or Latino.
Gaps and Recommendations
The following gaps and recommendations cross cut across all the reports.
Recommendation:
The Department should encourage and sponsor the analysis of existing data by outside researchers. All types of data--vital statistics, hospitalization, medical care, immunization, cancer screening, risk factor data, and incidence and prevalence--should be included.
Recommendations:
1. Considerable progress has been made in the publication of vital statistics data for the OMB minimum categories for data racial and ethnic groups. For example, Health U.S. contains population and selected mortality data for those groups. In addition, the website http://raceandhealth.hhs.gov/ contains data specifically targeted to the six focus areas. Because of the central role of vital statistics in public health, and because the availability and visibility of the current data can increase, this area deserves special attention. Although mentioning the existence of a gap, the six focus area reports did not mention the specific recommendations outlined here.
2. Examine the possibility of expanding the CDC WONDER system, especially the mortality data, to include data for: (1) the OMB minimum categories for race and ethnicity; (2) American Samoa, Guam, Puerto Rico, the U.S. Pacific territories, and the Virgin Islands; and (3) life expectancy.
3. Examine the possibility of increasing the visibility and availability of the data from the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health website by: (1) increasing the number of agency websites that it can be hotlinked from, such as the CDC, NCHS, and Healthy People 2000 websites; and (2) increasing the usefulness of data on the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health website by periodically publishing it as a government document and in the public health literature. For example, an apparent decline in childhood immunization rates between 1990 and 1995 would become more apparent if the data were published in a government document or as a journal article.
4. Health U.S. should consider including estimates of life expectancy, by sex, for the OMB standard/minimum groups.
Recommendations:
1. The OMB directives specify a minimum level for presenting data by race and ethnicity. The guidelines also encourage the presentation of data for racial and ethnic subgroups when and where possible, as long as the results can be collapsed back into the minimum categories. Where data currently exist for key subgroups, publication should be encouraged and, if possible, made available as public use data sets. For example, data for racial and ethnic subgroups for the six focus areas are contained on the Race and Health website, and cancer incidence and mortality rates from the National Cancer Institute's SEER have been published for both the OMB standard/minimum groups and for racial and ethnic subgroups. Where possible, collection of data for racial and ethnic subgroups should be encouraged.
2. Evaluate the possibility of collecting risk factor data for Hispanic subgroups, AA/PIs and their subgroups, and American Indians or Alaska Natives using the BRFSS, the Youth Risk Factor Survey and even a future census.
3. Encourage the development of population-specific examination surveys targeted to small ethnic subgroups or medically underserved populations which cannot be included in the NHANES through oversampling.
Recommendations:
This gap was mentioned in the Cardiovascular and HIV reports, but it may apply to the other areas as well. To fill this gap, it was recommended that:
1. HCFA collect hospitalization data on Hispanics and Hispanic subgroups.
2. NCHS expand the Hospital Discharge Survey to include data for those groups.
Recommendations:
Two recommendations for alleviating this gap were suggested in an unpublished report titled, Race Initiative Report on Cardiovascular Disease. They are:
1. Encourage representation on the National Committee on Vital and Health Statistics from the National Medical Association (NMA), COSSMHO, National Hispanic Medical Association (NHMA), Association of Asian/Pacific Community Health organizations, Indian Health Service (IHS), and an historically black medical school.
2. Solicit data concerns in the planning stages of the NCHS surveys NHANES and NHIS from the NMA, IHS, COSSMHO, NHMA, Association of Asian/Pacific Community Health organizations, and an historically black medical school.
Recommendations:
1. Detailed studies have been conducted on the effects of the year 2000 standard population for African Americans and whites, but the effects on mortality rates on other racial/ethnic groups should be studied.
2. Evaluate the impact of ICD-10 coding for mortality and morbidity include analyses by racial/ethnic groups.
The following gaps and recommendations were identified in specific health focus area work group reports.
Cancer Screening and Management
Recommendation:
Explore the feasibility of moving basic questions on mammograms and pap smear screening from NHIS supplements to the core questionnaire.
Recommendation:
Although SEER has done an excellent job of reporting on racial and ethnic groups given current resources, NCI should explore the feasibility of expanding SEER and/or forming alliances with the State-based cancer registries in order to produce stable rates for the minimum racial and ethnic categories and to allow the system to produce rates for ethnic subgroups.
Cardiovascular disease
Recommendations:
The Cardiovascular Work Group placed special emphasis on this topic and proposed several possibilities for improvement.
1. Encourage evaluation of the possibility of collecting risk factor data for Hispanic subgroups, Asian/Pacific Islanders and their subgroups, and American Indian/Alaska Natives using the NHIS, BRFSS, the Youth Risk Factor Survey, and a future census.
2. Encourage the development of population-specific examination surveys targeted to small ethnic subgroups or medically underserved populations which cannot be included in NHANES through oversampling.
Recommendations:
NHLBI has collected incidence data from different sources such as the Atherosclerosis Risk in Communities (ARIC) Study and the Minnesota Heart Survey. Although the data from those sources are relevant, the samples are too small to estimate current levels and incidence trends for the minimum standard racial/ethnic categories. Moreover, the trends for African Americans can be unstable. Therefore:
1. NIH, CDC, and/or their contractors should continue to analyze HCFA Medicare data to establish approximate national trends in incidence, case fatality, and one year survival rates for acute myocardial infarction (AMI), congestive heart failure, and acute stroke in each major racial/ethnic group.
2. Because HCFA data will not include incidence data on younger adults and older adults not receiving Medicare benefits, data will only be approximate. As a result, NIH, CDC, and HCFA should explore the feasibility of setting up a SEER-like registry for heart diseases and stroke.
Recommendation:
Encourage geocoding of all health-related data to determine patterns of health and disease among minority populations. Patterns that may be masked when evaluating data at the State level include mortality, morbidity, risk factors, and health care utilization.
HIV/AIDS
Recommendation:
Work more closely with service providers, consumers, epidemiologists, and providers in native communities.
Recommendation:
To allow the U.S. to target programs and resources most effectively, we must be able to monitor the epidemic. This means improving our ability to track early HIV infections before they progress to AIDS. As of December 1997, only 27 States sent data to CDC on all confidentially reported cases of HIV infection. Two additional States reported only cases of HIV infection among children under age 13, and one State reported cases only for children under the age of six. CDC and the State public health departments should consider the feasibility of reporting all HIV infections anonymously.
Adult Immunization
Recommendation:
CDC should be encouraged to determine the feasibility of setting up such a surveillance system.
Recommendation:
CDC should be encouraged to determine the feasibility of setting up such a surveillance system.
Recommendation:
Improve time of availability of NHIS- and BRFSS-reported vaccination levels to less than one year after data are collected.
Recommendation:
Assess the feasibility of using the NIS sample frame to survey adults.
Data on vaccination levels for American Indian/Alaska Natives and Asian/Pacific Islanders populations, age 65 years and older, are lacking.
Recommendation:
Encourage a feasibility study on conducting special surveys of vaccination levels for persons ages 65 and over, or add vaccination questions on existing surveys of these populations.
Childhood Immunizations
Recommendation:
Although some States have already implemented immunization registries, in the long term, a national system of registries is needed. The Data Working Group encourages a feasibility study on implementing a national system of State-based immunization registries. At minimum, the NHIS and the NIS should continue to collect information on vaccine coverage, along with information on race and ethnicity and socioeconomic status.
Recommendations Culled from Work Group Reports
Infant Mortality Work Group Report--Draft of December 16, 1998.
Cancer Workgroup Report--Draft of December 16, 1998.
Improve the timeliness, quality, and completeness of cancer data in those 45 States, the District of Columbia, and three Territories that are funded by the Program.
Focus audits on the accuracy of classification of racial and ethnic data elements and the complete reporting of these data items.
Focus training on the collection of racial and ethnic data elements; the evaluation of the completeness and the accuracy of these data elements; and the importance of denominator data by race, ethnicity, sex, and age for State and county geographic areas.
Focus technical assistance on the generation and interpretation of cancer rates and percentages by race and ethnic group for reporting purposes.
Explore the feasibility of moving basic questions on mammograms and pap smear screening exams from NHIS supplements to the core questionnaire, so that they would be asked every year.
Cardiovascular Work Group Report--Draft of December 16, 1998.
Vital statistics should be used to develop unbiased mortality rates for Hispanic subgroups, American Indian/Alaska Natives and for Asian/Pacific Islanders; and in conjunction with the Bureau of Census, accurate population data for smaller racial/ethnic groups.
Morbidity data should be used to develop hospitalization and prevalence rates for Hispanics, American Indian/Alaska Natives.
Needed data on cardiovascular risk factors include current risk factor data for Hispanic subgroups, Asian /Pacific Islander subgroups, and for American Indian/Alaska Natives.
Medical care databases should be exploited to yield current utilization data for Hispanics, Native America/Alaska Natives, and Asian/Pacific Islanders.
Encouraging representation on the National Committee on Vital and Health Statistics from the National Medical Association, COSSMHO, National Hispanic Medical Association, Association of Asian/Pacific Community Health organizations, Indian Health Services, and a historically black medical school.
Encouraging the solicitation of data concerns for planning NCHS surveys, including NHANES and NHIS, from the National Medical Association, Indian Health Service, COSSMHO, National Hispanic Medical Association, Association of Asian/Pacific Community Health organizations, and a historically black medical school.
Encouraging an assessment of the impact of race category changes for census 2000 and of ICD-10 on mortality rates.
Encouraging HCFA to collect data on Hispanics. Also, HCFA should collect information on race and ethnicityity, as described by OMB.
NIH, CDC, and/or their contractors should consider continuing to analyze HCFA Medicare data to establish approximate national incidence, case fatality, and one year survival trends for acute myocardial infarction, congestive heart failure, and acute stroke in each major racial and ethnic group.
NCHS should consider adding a Hispanic ethnicity category/methodology in data collection and improve completeness of race reporting in the National Hospital Discharge Survey.
Considering a future census as a mechanism for selected risk factor data for smaller race and ethnic groups including American Indians.
Augmenting the BRFSS to obtain risk factor data on Hispanic subgroups, Asian/Pacific Islander subgroups, and American Indians/Alaska Natives.
Considering increased use of the Youth Risk Behavior Survey with oversampling of minority populations in order to obtain risk factor information on Hispanic, Asian/Pacific Islander, and American Indian/Alaska Native youth.
Considering implementation of cross-cutting recommendations on data issues from the COSSMHO National Hispanic Health Symposium and the HHS Hispanic Agenda for Action (http://www.cossmho.org/).
Consider further analyses of HCFA and other national data sets by race and ethnicity.
Encourage HCFA to collect data on Hispanics.
Consider addition of Hispanic ethnicity to National Hospital Discharge Survey and other surveys.
Encouraging greater use of the BRFSS mechanism with oversampling of minority populations in order to calculate stable estimates of risk factors at both State and local levels.
Encouraging geocoding of all health-related data in order to determine patterns of health and disease among minority populations--mortality, morbidity, risk factor, health care utilization-- patterns which may be masked when evaluating data at the State level.
Encouraging funding of follow-up of adults examined in NHANES III for incidence of CVD (Cardiovascular Diseases [Major] ICD 9 Nos. 390-448).
Complete implementation of unfinished items in Recommendation 7 (Improving and fully using available sources of data) of the 1985 HHS Secretary's Task Force on black and Minority Health.
Consider implementation of unfinished recommendations of the CVD Working Group of that Task Force (e.g. determining the incidence of sudden cardiac death in racial groups, and developing statistics for growing subgroups such as cardiac death in racial groups, and developing statistics for growing Asian subgroups such as Cambodians, Vietnamese, East Indians).
Diabetes Work Group Report--Draft of November 6, 1998.
HIV/AIDS Work Group Report--Draft of September 30, 1998.
Child and Adult Immunization Work Group Report--Draft of December 11, 1998.
Adult Immunization
Surveillance of Influenza and Pneumococcal Disease
Research on Patient Acceptability of Vaccination
Surveillance of Vaccination Use
Childhood Immunizations