Eliminating Health Disparities Measurement and Data Needs (2004) / Chapter Skim
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Appendix E State Collection of Racial and Ethnic Data
Appendix E State Collection of Racial and Ethnic Data
Pages 232-248
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From page 232... ...
Geppert and Sara J Singer are staff researcher and senior research scholar, respectively, at the Stanford University Center for Health Policy; Jay Beuchner is chief at the Rhode Island Department of Health Office of Health Statistics; Lorin Ranbom is chief at the Ohio Department of Human Services Office of Health Service Research; Walter Suarez is director of the Minnesota Health Data Institute, InformationSystems and Operations; and Wu Xu is director for the Utah Department of Health, Office of Health Care Statistics.
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TABLE E-1 Summary of Characteristics of State Racial and Ethnic Data Sources Source of Racial Self-Reported Coding Data Source Ethnic Data or Third-Party Standard Hospital discharge Providers Self-report/ UB-92/ Perceptual State-specific assessment Vital statistics -- death Funeral director Family inquiry OMB/NCHS Vital statistics -- birth Mother Self-report OMB/NCHS Cancer registries Providers Self-report/ OMB/SEER/ Perceptual NPCR assessment Medicaid County workers Self-report/ OMB Perceptual assessment Health interview surveys Telephone survey Self-report State-specific NOTE: UB-92 = Uniform Bill for Hospitals; OMB=Office of Management and Budget; NCHS = National Center for Health Statistics; SEER = Surveillance, Epidemiology, and End Results; NPCR = National Program of Cancer Registries.
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From page 234... ...
Vital Statistics All 50 states collect birth and death certificate data, and virtually all states provide the National Center for Health Statistics (NCHS) with racial, ethnic, and socioeconomic data from birth and death records.
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We interviewed and collected written responses from state administrators responsible for the most common state data sources (i.e., state discharge data, vital statistics, cancer registries, Medicaid enrollment, and health interview surveys)
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Recommended practices are strategies and practices related to the collection and use of racial and ethnic data that are, in the opinion of the state data organization representatives, particularly effective. RESULTS Our emphasis was not on a systematic analysis of all state collection
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From page 237... ...
There is a spectrum of specificity of data collected: in general, hospital discharge data are at one extreme, with limited racial and ethnic categories; survey and registry data are at the other extreme, with multiple categories, including the ability to record more than one race per individual; and Medicaid enrollment data and vital statistics data are in the middle. For example, the California Cancer Registry has 29 race categories and 9 Hispanic ethnicity categories (Table E-3)
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From page 238... ...
format. The SID data use a common denominator approach to coding race and ethnicity, and variation among states in the coding may mean that some states do not have race or ethnicity reported in the Healthcare Cost and Utilization Project (HCUP)
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Table E-4 shows that states that require the reporting of race or ethnicity as part of the discharge data submission have higher rates of compliance than states that collect the data voluntarily or do not require resubmission if the data are missing or invalid. States with mandated reporting showed 97 percent compliance in data collection and reporting, while states with voluntary reporting showed 83 percent compliance.
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From page 240... ...
The results again seem to demonstrate that reporting requirements and training matter in data collection. Benefits of the Collection of Racial, Ethnic, and Socioeconomic Status Data The state administrators we interviewed identified five main benefits of collecting racial, ethnic, and SES data in terms of the programs administered by their agencies.
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(3) Information crowd-out In data collection, careful consideration must be paid to constraints on time and resources that may require reconciling the relative importance of additional data collection on race and ethnicity with data collection of other important individual characteristics.
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Examples of racial, ethnic, and SES data collection policies and procedures include agencywide policies covering some or all of the following: minimum standard racial and ethnic categories to be collected, format for data collection forms, language for telephone or selfadministered surveys, recommended method for collecting data from subjects, standard data edit criteria, and standard for maximum missing responses. Some state agencies took the opportunity to develop such policies as part of the conversion to the revised federal guidance implemented with the 2000 census.
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From page 243... ...
, such as primary care physicians for reportable diseases, funeral directors for death certificates, and hospital admissions clerks for hospital discharge data and Emergency Department data. Again, such programs have been developed to support the change to the new federal guidelines.
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CONCLUSIONS States' efforts to collect racial, ethnic, and SES data either have evolved over time in response to changing circumstances, as in the case of hospital discharge abstracts and other sources of administrative data, or have been carefully planned in advance and in detail, as in the case of many of the state-based health assessment surveys. These data collection efforts meet a variety of public policy needs, and must be tailored to specific local conditions and program characteristics.
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The lessons learned and practices developed for training in vital records and registries in particular could be applied to administrative data systems more generally. Federal Standards and State Incentives Federal standards and state incentives to adopt them have an important role in creating a common infrastructure for the collection of racial, ethnic, and socioeconomic status data.
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From page 246... ...
Department of Health and Human Services. SURVEY INSTRUMENT National Academy of Sciences Panel on DHHS Collection of Race and Ethnicity Data Cost-Benefit Analysis of State-Level Data Collection The questions below are designed to solicit information from data collection agencies in selected states about the potential costs and benefits of enhancing and standardizing race and ethnicity data collection in the
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From page 247... ...
While we are interested in race, ethnicity, and socioeconomic status data in general, our analysis will focus on the following data sources: Medicaid data, Hospital Discharge Abstract data, Birth and Death Records, Cancer Registry data, State Health Interview Survey data, and Behavioral Risk Factor Surveillance System data. Therefore, we request that you also focus your responses on the subset of these data sets about which you are aware.
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From page 248... ...
· What is the intended purpose(s) of the race and ethnicity data your agency currently collects?
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