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IMPROVING RACIAL AND ETHNIC DATA ON HEALTH INTRODUCTION Disparities in health outcomes and in health care access, utilization, and quality between people of different races and ethnic backgrounds are well documented in the literature (IOM, 2002a). Government and private- sector parties have sought to better understand these disparities in order to formulate strategies to ensure better health and the highest quality of care for everyone. Often, however, these efforts have been hampered by the limited availability and inconsistent quality of data on race, ethnicity, and other characteristics of individuals. Concerns about these data weaknesses led Congress to ask that the National Academies conduct a comprehensive study of the adequacy of the Department of Health and Human Services (DHHS) data collection sys- tems in measuring race, ethnicity, and socioeconomic status to better un- derstand disparities (PL 106-525, 20001. The DHHS Office of the Assis- tant Secretary for Planning and Evaluation (AS PE), with support from several other DHHS offices, asked the Committee on National Statistics (CNSTAT) of the National Academies to convene a panel of experts to review the Department's data systems.1 ASPE and CNSTAT developed the Other DHHS agencies sponsoring the study include the Agency for Healthcare Re- search and Quality,, the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the HIV/AIDS Contingency Fund, the National Institutes for Health, the Office for Civil Rights, and the Office of Minority Health.
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2 IMPROVING RACIALAND ETHNIC DATA ON HEALTH charge for the study based upon this legislation ancl upon the Department's own needs for review of their clata systems, giving the panel flexibility to review other related clata needs as they arose. The Panel on DHHS Collec- tion of Race ancl Ethnicity Data is reviewing DHHS' systems ancl practices for collecting racial, ethnic, socioeconomic, ancl language clata as well as related practices in other federal agencies such as the Social Security Acl- ministration ancl in private providers ancl insurance companies. The panel . . . ~ . IS 1C ~entltylng: . . Data needed to evaluate the effects of race, ethnicity, ancl socioeco- nomic status on disparities in health, health care, ancl access to health care; The effectiveness of the clata systems of DHHS, other fecleral, state, ancl local agencies, ancl the private sector in the collection ancl utili- zation of clata on race, ethnicity, ancl socioeconomic status. · Critical gaps in clata on race, ethnicity, ancl socioeconomic status in existing systems, ancl methods for filling those gaps. The Workshop Up to now, public consideration of clata used to measure ancl uncler- stancl health ancl health care disparities has focused on federal public health clata systems. However, many federally published statistics about health conditions ancl health care are derived from clata systems maintained by states ancl by private health care systems. Because these clata sources are very diverse ancl fragmentecl, the infor- mation is incomplete, not stanclarclizecl, ancl not comparable across the health care system. The panel convened the Workshop on Improving Racial ancl Ethnic Data in Health to review information about current private-sector ancl state clata collection practices in light of existing fecleral, state, ancl local regula- tions, laws, ancl requirements.2 The workshop presentations featured the perspectives of clata users, health care proviclers, insurance plan representa- tives, state ancl local public health officials, ancl regulatory officials. Partici- pants assessed policies, practices, barriers, ancl opportunities for collecting racial ancl ethnic clata in their settings, ancl explored ways that private ancl 2The workshop was held December 12-13, 2002. The workshop agenda and partici- pant list are included in Appendix C.
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REPORT OFT WORKSHOP 3 state systems can be improved to address data needs. In preparation for the workshop, the panel commissioned four background papers to fill gaps in knowledge of private-sector and state government policies and practices and to address the importance of racial and ethnic data collection (Bocchino and Wheeler, 2003; Fremont and Lurie, 2003; Geppert et al., 2003; and Nerenz and Currier, 20031.3 The panel is also examining the role of socio- economic status regarding health and health care disparities. However, the workshop intended to focus only on racial and ethnic data collection. The panel's final report will contain a full consideration of the collection of racial, ethnic, and socioeconomic status data. The purpose of the workshop was to examine the collection of data outside the federal government, i.e., by states, localities, and nongovern- ment entities including health plans, groups, and providers. As such, the workshop focused on the role of private organizations and state govern- ments in collecting and reporting about health care and health status statis- tics. Much ofthis information is collected in the context of providing health care, and therefore is generally used in the context of measuring health care utilization, quality, and treatment and treatment outcomes rather than health status. There are, however, important differences in collecting, re- porting, and using health status and health care indicators for racial and ethnic groups. Health status refers to the health of an individual, the pres- ence of a health condition, or illness (e.g., obesity or suffering from hyper- tension), while health care refers to the process of treating illness or injury and preventive measures. The panel recognizes that there are also important concerns related to reporting health status indicators for racial and ethnic groups. These con- cerns were addressed in the workshop only to the extent that sources of data used to measure health status are collected by states or private sector sources. Data used to measure both health status and health care disparities will be further addressed in the panel's final report. This report summarizes the workshop's discussions and the views ex- pressed by workshop participants without commentary or response by the panel. Discussions emphasized information collected by states and private organizations from health care records, rather than on information col- 3Summaries of these papers are included in Appendix B. the full papers will be pub- lished with the final report of the panel.
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4 IMPROVING RACIALAND ETHNIC DATA ON HEALTH lected from persons, households, and families through health surveys. The panel will consider these more fully as it prepares its final report, which will review federal, state, and private-sector data sources and will contain con- clusions and recommendations for improvement of this data infrastruc- ture. Main Themes The following themes emerged from the workshop presentations and . ~ discussions: 1. Racial and ethnic data help providers, plans, and state and local officials measure and address disparities among racial and ethnic groups in health status and care. These data provide important information about variations in access to care, quality outcomes, and the underlying causes of the variations. The data are used to implement improvements and to pro- mote informed health care decisions, including policy, consumerism, and value purchasing. 2. Some health care providers, insurance plans, and local officials erro- neously believe that federal law prohibits collection of racial and ethnic data on individuals. One legal analysis presented at the workshop demon- strated that collecting race, ethnicity, and primary language data is legal under federal law and permitted under most circumstances by state law. 3. Differences in the definitions and procedures used to collect racial and ethnic data are a major barrier to their appropriate use. Lack of stan- dardization inhibits the integration of this data collection in administrative records, surveys, and other health records. Representatives of health care providers and plans expressed the view that strong federal leadership was required to advance and improve the collection of racial and ethnic data and to work toward common standards for reporting. State government officials noted that much of the confusion about the appropriate racial and ethnic categories to use reflects federal agency stovepiping i.e., uncoordi- nated decisions made by individual federal agencies that can result in con- tradictory guidance to local and state agencies. State agencies respond to different federal requirements, making it difficult for them to integrate their data at the state level (Perot and Youdelman, 20011. 4. State and local government agencies as well as private providers and health plans face problems implementing changes in their computer sys- tems to collect consistent racial and ethnic data. Changes in management
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REPORT OFT WORKSHOP 5 information systems (MIS) are expensive. Many workshop participants be- lieve that until the standardization problems are addressed, it will not be possible to make substantial changes in their MIS systems. 5. Privacy is an important concern when collecting racial and ethnic data. A number of workshop participants agreed that the need for the data must be balanced against the need to protect individual privacy. 6. There are measurement issues as well as sampling problems in col- lecting racial and ethnic data. On one hand, respondents may have differ- ent definitions of their own identity depending upon the circumstances, and this variability will make it difficult to construct reliable measures. On the other hand, even when reliable measures are available, survey estimates for some groups are difficult because of their small numbers. Administra- tive data, which provide a complete register of all persons receiving a ser- vice, could potentially provide estimates for these groups because these data sets are larger. However, the primary purpose of transaction-based records is to record health care interventions, not to collect standardized racial and ethnic data. Consequently, reliable data about racial or ethnic groups with small populations may be difficult to report. 7. The perceived costs of collecting racial and ethnic data are a major barrier to convincing private organizations to implement collection. Some workshop participants pointed out that the largest cost of collecting racial and ethnic information is the cost of modifying data collection forms, pro- cedures, and information systems. They noted that a decision to collect racial and ethnic data on administrative records is directly related to avail- able information technology. For example, they reported that many state government agencies use old systems, which are difficult to modify. Chances in private-sector systems are costly as well. 8. There is considerable confusion over the meaning and applicability of the Office of Management Budget (OMB) "Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity." These standards and their appropriate implementation need to be clearly described for both DHHS agencies and non-DHHS organizations. Furthermore, it should be made clear that these represent only minimal standards that may be incorporated in a more complete set as the need arises. The body of this report presents the workshop participants' views on the importance of collecting racial and ethnic data, the legal and regulatory environment for the collection of such data, procedural issues, state policies and practices, and the role of private providers, health plans, and health care quality control organizations in collecting these data.
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6 IMPROVING RACIALAND ETHNIC DATA ON HEALTH THE IMPORTANCE OF RACIAL AND ETHNIC DATA COLLECTION Workshop participants argued that without racial and ethnic data, health care providers, insurers, and government agencies cannot work to identify or mitigate racial and ethnic disparities in health and health care. These indicators are important for enforcing civil rights law, identifying health and health care disparities and promoting understanding of the un- derlying causes of disparities, monitoring access to care, measuring the qual- ity of care and implementing improvements in health care quality, and stimulating consumerism and value purchasing. Participants see the goal as improving health for all. In the words of Gem Daus of the Asian and Pacific Islander American Health Forum, "we can all be equally sick and the disparity will be gone." But, he said, the goal is for everyone to have the best health possible. Historical Context and Impacts The historical prevalence of discrimination in the United States on the basis of race and ethnicity is undisputed. Policies that have included sla- very, segregation, and restrictive immigration have served to severely disad- vantage African-Americans, Hispanics, and other racial and ethnic groups. These policies were used in the field of health care as well for example, as health care facilities were segregated on the basis of race. Although civil rights laws and court decisions eliminated the legal basis for these policies by the end of the 1 960s, ending overt legal segregation in health facilities (Smith, 1999), disparities in health status and care persist. As noted in the recent IOM study (2002a), subtle differences in treatment exist even when providers believe they are acting without regard to race. The impact of historical segregation and other inequities lingers in social and economic disparities between groups. It not only influences health status, but also access to and use of care (IOM, 2002a) Enforcing Civil Rights Laws Title VI of the Civil Rights Act of 1964 requires government agencies to enforce equal access to care. Racial and ethnic data help regulators detect
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REPORT OFT WORKSHOP 7 both overt and subtle differences within health care organizations (Smith, 19991.4 Identifying Disparities In order to reduce or eliminate differences, the nation needs data on current conditions and trends. Yet in a time of increasing demands for accountability and transparency in health care, even a rudimentary ability to track basic processes and outcomes of care, including racial and ethnic information, is missing (Fremont and Lurie, 20031. In particular, the na- tion needs data to (a) identify racial and ethnic groups that are statistically more likely to experience different health outcomes; (b) determine protec- tive factors (i.e., practices that lead to improved health outcomes) that can improve health; and (c) to understand more clearly the effect of socioeco- nomic status and its interaction with race and ethnicity on the health of the individual. Trends in these factors need to be monitored across racial and ethnic groups at the national, state, and local levels. For example, it is im- portant to measure the relationship between racial data and morbidity and mortality rates for major diseases such as cancer, heart disease, diabetes, and HIV/AIDS (U.S. Department of Health and Human Services, 20001. Understanding the underlying causes and impacts of disparities first step toward reducing them. Racial and ethnic data help health care providers understand the effect of disparities on the services they provide and the facilities they maintain or support. While effective interventions are likely to vary across settings, it is important to monitor settings and sites in order to develop appropriate interventions and identify risk factors for people in different racial and ethnic groups, with different levels of lan- guage acculturation and literacy, in order to measure the impact of such factors on health status and health care. Access to Care Equal access to health care is protected by civil rights laws, and racial and ethnic data can be used to establish whether the goals set forth in law are in fact realized in practice. Government surveys ask individuals about 4Smith describes how this kind of data was used to desegregate hospitals when Medi- care was enacted (1999).
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8 IMPROVING RACIALAND ETHNIC DATA ON HEALTH access to care, including whether they have health insurance and a regular provider of health cared These questions are proxies for assessing the re- spondents' ability to get care without delay from appropriate medical pro- viders, including specialists. Analysts use the resulting data to track access. Utilization of Care Information is needed to monitor utilization of health care services as well as access. Even when patients have the same insurance coverage and are in the same settings, there may be dramatic differences in patients' uses of procedures, which may in turn indicate important differences in the qual- ity of their health care. Key indicators include the rates of cardiovascular procedures, renal transplants, rehospitalization for congestive heart failure, and lower-extremity amputations in diabetics. Utilization of routine pre- ventive and diagnostic services is also important. Improvements in Health Care Quality Workshop participants also noted the importance of ensuring quality health care. The paper prepared by Fremont and Lurie describes how racial and ethnic data can be used to improve health care (Fremont and Lurie, 2003) by serving as a basis for: · Determining program eligibility, forecasting budgets, and conduct- ing needs assessments, Evaluating the health status of the overall population or population subgroups, · Generating hypotheses about the potential causes of observed dis- parities or health problems, . · Identifying the need for and helping to focus special initiatives de- signed to reduce disparities, Evaluating programs by measuring the progress achieved under . · · . . those 1nltlatlves, ant ~ Reporting to the public and to regulatory agencies. 5Some examples include, the Current Population Survey, Medical Expenditure Panel Survey, and National Health Interview Survey.
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REPORT OFT WORKSHOP 9 Participants also noted that identification of the primary language of clients is essential to provide equal access to care. Providers and services administrators need the data to gauge the need for translators and for creat- ing appropriate language materials for forms and information. Stimulating Consumerism and Value Purchasing Value purchasing and consumerism strengthen clients' ability to de- mand better services by enabling them to select plans and providers who deliver the most value. Yet, the success of these mechanisms depends on providing consumers with sufficient information about the quality of care delivered. Outcome measures help consumers make more informed choices among health plans, and this enhanced consumerism improves the quality of health care and lowers its cost. Outcome measures also help employers make better choices among the coverages to offer their employees. Comparative information about health plan performance in providing customers with access to preventive services and about customer satisfac- tion with care is now routinely reported by the Health Plan Employer Data and Information Set (HEDIS) for participating plans. However, because the information does not include racial and ethnic data, it is virtually im- possible to monitor quality for these groups. Without such data, mem- bers of these groups are not able to assess whether their treatment by a particular health plan varies from the treatment provided for other popula- tion groups, and plans cannot assess their own performance in providing services to subgroups in their enrolled population. Absent relevant mea- sures and information, health plans also miss the opportunity to work with providers, health departments, and elected officials to redress disparities. Quality of Life Disparities in health status and care contribute to an overall reduction in the quality of life for minority groups as well as the nation (IOM, 2002a and 2002b). Workshop participants noted that both have been extensively documented across a wide variety of settings and diseases that disparities in health care contribute to discrepancies in health outcomes.
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10 IMPROVING RACIALAND ETHNIC DATA ON HEALTH LAWS, REGULATIONS, MANDATES, AND REQUIREMENTS Federal, state, and local laws and regulations have different require- ments that provide for or limit the collection of racial and ethnic data.6 Government and regulatory requirements set the conditions under which these data are collected by providers, health plans, and physicians. During the workshop session on Legal Aspects of Race and Ethnicity Data Collec- tion, Mara Youdelman of the National Health Law Project (NHeLP) re- ported on the results of a legal survey conducted by NHeLP with the sup- port ofthe Commonwealth Fund (Perot end Youdelman, 2001) and offered preliminary information for a state survey conducted by NHeLP for the DHHS Office of Minority Health. Moya Gray, of the Hawaii Office of Information Practices, discussed privacy and confidentiality concerns in collecting racial and ethnic data. On one hand, monitoring the health and health care of racial and ethnic groups can provide the evidence essential to ensure equal health care access and quality. On the other hand, concerns about use of the informa- tion for discriminatory purposes, invasion of privacy, confidentiality, cost, and client cooperation have led to restrictions in its collection. Evidence was presented to suggest that providers collect more com- plete information when the reporting of hospital data is required by law. leffrey Geppert described the results of a Stanford University study, which found that reporting is more complete if state laws require the reporting of racial data along with hospital discharge data (Geppert et al., 20031. The study also found that the legal reporting requirement has a direct impact on data variability among hospitals: in states with mandatory reporting of ra- cial data, discharge records are on average 97 percent complete and there is not much variation across hospitals (reporting rates range from 93 percent to almost 100 percent); but in states with voluntary compliance, average compliance is 83 percent and there is much more variability across hospi- tals (reporting rates range from 23 percent to almost 100 percent). Federal and State Laws Affecting the Collection of Racial and Ethnic Data Mara Youdelman reported that many providers, insurance plans, and local officials erroneously believe that federal law and state governments 6The workshop did not review legal or regulatory requirements related to collecting information about socioeconomic variables.
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REPORT OFT WORKSHOP 11 prohibit collection of racial and ethnic data. But, Youdelman's legal analy- sis, conducted for the Commonwealth Fund and included in a report co- authored with the Summit Health Institute for Research and Education, determined that the collection of race, ethnicity, and primary language data is in fact legal under federal law and permitted under most circumstances by state law. While the federal government has many reports and data col- lection instruments that request racial and ethnic data from health care providers, it does not often enforce the reporting of these data.7 Federal Regulations Title VI of the Civil Rights Act of 19648 stipulates that any entity that receives federal financial assistance may not discriminate on the basis of race, color, or national origin. Virtually all health care providers receive some federal financial assistance,9 and so they are required to maintain records that can be used to monitor disparities (Perot and Youdelman, 20011. Data about clients' race, ethnicity, and primary language can be used to show that providers, plans, hospitals, and other organizations re- ceiving federal funds have complied with the nondiscrimination provisions of Title VI. Although covered entities use these data to show compliance with the legal requirements, Title VI does not in fact require any particular data collection. Rather, regulations implementing Title VI issued by the Depart- 7An ongoing study by the same organization is reviewing laws, policies, and practices in all of the states and the District of Columbia. This study is examining the extent to which health insurers and managed care organizations are permitted to collect and report race, ethnicity, and primary language data. Initial results from this state survey are based on inter- views in 20 states. The researchers obtained information from Medicaid agencies, some health plans, the offices of minority health, and other state and health care officials to study prevail- ing practices. The results reported here are based on preliminary information provided dur- ing the workshop and are not to be attributed to the study's sponsor, the DHHS Office of Minority Health. A subsequent report, expected at the end of 2003, will provide information from all states. 842 U.S.C. § 2000d, d-4a. 9For example, providers receive payments from Medicare, Medicaid, or the State Children's Health Insurance Program (S-CHIP) . Once an entity starts to receive federal funds, it is bound by Title VI not to discriminate. This provision also extends to all programs or activities of any entity that receives federal funds.
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REPORT OFT WORKSHOP 23 is not definitive at the individual level, it might be used to identify patterns . · · .. suggesting systematic reporting errors. Bucchner reported on a study in Rhode Island that compared data from a surveillance study of traumatic brain injury with hospital discharge records. Investigators collected information on all traumatic brain-injured patients who were treated in hospitals in Rhode Island; about 2,800 cases were identified over a 4-year period. Data from the study were compared with routine hospital discharge data linking medical records to the hospital discharge abstract. The study used trained abstracters who went into all the hospitals in the state and examined the medical records to collect informa- tion on the patient. Both the medical records and the hospital discharge data rely on reports compiled by hospital staff, and so the comparison re- lied on the same underlying data. Neither the medical records nor the dis- charge data involved collecting information from the patients. The comparison showed that hospital record keepers do a good job of identifying white clients. Almost 99 percent of the white patients identified in the traumatic brain injury study were correctly identified as white in the hospital discharge data. But for all of the minority populations, those rates were lower. In particular, only one of the nineteen Native Americans in the study was identified as Native American in the hospital discharge data. STATE AND LOCAL DATA COLLECTION AND REPORTING States collect health care data from many sources, and workshop par- ticipants noted that racial and ethnic data play an important role in all of them. These include the following: · vital records, used to compile birth and death statistics; · registries of people suffering from particular diseases for example, cancer registries or screening registries for risks such as exposure to lead; · surveillance databases that compile information on conditions re- portable to the Centers for Disease Control and Prevention (CDC) as well as other conditions defined by states as reportable; · encounter and administrative data, including hospital discharge records, data for public payers, Medicaid, administrative data, and enroll- ment data; · health workforce data for example records of practitioners' li- censes;
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24 IMPROVING RACIALAND ETHNIC DATA ON HEALTH · population health surveys, which many states implement to gather health status information on groups of state residents. Several participants believe there are important interactions among these sources, and that the data can be made more useful and informative by linking records from various databases. For example, Geppert suggested that linking death certificate data with encounter records, or hospital dis- charge data with birth data, will produce better measures of health out- comes. Participants observed, however, that such linkages can be hampered by variations in racial and ethnic categories both among states and between states and the federal government. Sources of such variation include: . Variation among states in data formats, content standards, code sets, tabulation, and reporting. · Variation within states in policy, procedures, and training. For example, Daniel Friedman reported that only about half of roughly 75 individual record data sets at the Massachusetts Department of Public Health have racial and ethnic data, and most of those three dozen data sets derive, directly or indirectly, from federal programs such as those of the CDC. He observed that, "Even though we are 5 years past the issuance of the 1997 revised federal racial and ethnic standards, there is variation from program to program in how racial and ethnic identifiers are operationalized due largely to differences in federal agency requirements." This creates a particular problem for states because their data collection is more centralized. Consequently, states find that they have to accommodate their systems to multiple federal standards. · Challenge of small numbers. States also face the problem that fed- eral standards specify reporting for particular groups, which might not be numerous within a particular state. This can and does cause imbalances in state reporting—groups that are more numerous may not be reported, while the reporting of smaller groups is required. · Reporting detailed groups. In the past, states have followed the practice of reporting two groups, "whites" and "nonwhites." The problem with this approach is that it obscures important differences within these groups. · Different perspectives offederal and state governments. Federal
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REPORT OFT WORKSHOP 25 and state governments have different reasons for reporting and using racial and ethnic data. In the words of Friedman, "State governments and local governments are not just mini federal governments, and state health departments and county health departments are not mini-Centers for Disease Control Land Preventionl ICDCI." · Requirements for pulolic health initiatives. States need racial and ethnic data to design effective public health interventions. Friedman argued that "Broad race categories are totally and completely insufficient for this purpose. Detailed ethnicity categories including de- tailed ethnicity categories for Blacks, Latinos, Asians are needed in order to launch appropriate interventions." He reported that in Massachusetts the difference in low birth weight rates and adequacy of prenatal care be- tween Cambodians and American-born Chinese is almost 50 percent; be- tween Cuban Americans and Puerto Ricans born in the continental United States, roughly 25 percent; between mothers who identify themselves as African-American and those who identify themselves as Barbadian or la- maican, roughly 25 percent. Thus, the variation within a racial group is just as great as the variation between racial groups. Consequently, a public health intervention designed for "Asians" or "Latinos" or "Blacks" cannot be effective. Bucchner pointed out that those who actually must collect the data are not consistently trained. Many of them do not work for state agencies but for health care facilities, providers, or funeral homes, and they report to the state under different programs. Turnover in these jobs can be high and continual retraining is often required. Quality control procedures are re- quired. These include feedback to the data collectors, the checking of basic data entry for consistency, accuracy, and relevance, and follow-up quality control studies. A study conducted by Jeffrey Geppert, of the Stanford Center for Health Policy, identified 77 specific state initiatives that were based in whole or in part on health status, health care, or public health data disaggregated for different racial and ethnic groups (Geppert et al., 20031. For example, the Florida Chronic Disease Community Intervention Program aims to reduce cardiovascular disease, diabetes, and associated complications. The study targeted migrant agricultural workers in Florida's rural Pascal County
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26 IMPROVING RACIALAND ETHNIC DATA ON HEALTH for intervention based on national data that report higher prevalence of these conditions. The health department initiated door-to-door health as- sessments (blood pressure, cholesterol, and blood glucose screenings), re- ferrals to community clinics, and sponsorship of community centers that conducted classes that encouraged physical activity. It used bilingual health practitioners to teach better nutritional prac- tices through cooking classes and other kinds of health promotion activi- ties. The program measured the reduction of disease prevalence 5 years later. Limited Information Technology Lorin Ranbom, with the Ohio Department of Health, reported that the limited information technology resources available to state government offices determine how data are compiled and analyzed. Statisticians and epidemiologists originally created systems on their desktop computers with only limited support from computer professionals and using relatively simple off-the-shelf software. Years later, the states have found themselves relying on these systems to generate information for state policy and regu- latory decisions and to implement score cards. But these discrete legacy systems do not use the same data element definitions for unique patient identifiers, for geography, or for demographics, including racial and ethnic data, and the discrepancies greatly increase the effort required to achieve comparable data sets. Ranbom described how over the past 5 years state Medicaid programs transformed themselves from the payer of last resort to population-based health plans that are consumer focused and performance based. Therefore, he said, "Understanding and reducing health disparities is, or should be, a big part of our work in Medicaid programs." He reported that in the past, about 80 percent of eligibility determinations were based on personal inter- views of clients, whereas now roughly 70 percent of eligibility determina- tions are initiated through a mail-in system. Thus Medicaid programs have moved toward self-determination of racial and ethnic information. But he cautioned that "African-Americans have a much lower response rate to consumer surveys than other minorities and whites." While the survey attempts to compensate by oversampling and by weighting re- sponses, in his view "the NCQA and the National CAMPS Benchmarking Database requirements for health plans lack the methodological sophistica-
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REPORT OFT WORKSHOP 27 tion to deal with these issues" and as a result health disparities are often misrepresented. Counties Counties are on the front line of data collection efforts targeted to help eliminate racial disparities. David Solet, an epidemiologist with King County (Seattle, Washington) Health Department, summarized a project he conducted. The study included a special risk factors survey designed to obtain data for five different Asian groups, Latinos, African-Americans, and whites. The resulting data were used to implement initiatives to meet the needs of these groups. The survey found that a large number of African-Americans believed they suffered discrimination when they used health care providers and, as a result, were less likely to visit health care providers when they had health problems. The county invited selected respondents to provide more de- tailed information in longer interviews and focus groups. They found that respondents believed they suffered from differential treatment and offen- sive comments. The county now uses this information to influence health care providers to address these concerns. PRIVATE-SECTOR DATA COLLECTION Several workshop participants presented papers on how health plans, hospitals, and medical groups approach disparities in the context of quality improvement (Nerenz and Currier, 2003; Bocchino and Wheeler, 20031. The presenters contended that such disparities erode the quality of care, but that health plans, hospitals, and medical groups have mechanisms- including the collection of racial, ethnic, and other consumer-related data for measuring and improving quality, and these mechanisms can be used to address the disparities. Furthermore, each of the entities has a clear and formal line of accountability that runs from purchasers to health plans to hospitals and medical groups and ultimately to individual patients. This accountability is embodied in formal contractual relationships that include expectations about the absence of inconsistencies or disparities. Workshop participants from the private sector suggested that both pub- lic and private purchasers can and should play an important role in reduc- ing health care disparities through the use of improved data collection. For example, Nerenz observed, "in the city of Detroit if the three auto compa-
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28 IMPROVING RACIALAND ETHNIC DATA ON HEALTH nies get together they can substantially influence the structure of health care. If the purchasers rally around a particular point and say it matters to them, the world changes." Health Plans Eileen Peterson, from the Center for Health Care Policy and Research at United Health Group, discussed the collection of racial and ethnic data by health plans. According to Peterson, health plans collect racial and eth- nic data from their members or enrollees for a variety of reasons: for evalu- ating differences in access to care and compliance with therapies, for de- signing culturally appropriate educational and member communications, and for designing clinical in-service quality improvement activities. In her view, "health plans recognize cultural diversity as an important issue, which offers challenges and opportunities. Health plans have collected some data mainly through indirect methods, through census tracking, through sur- veys, and voluntarily on enrollment forms. Even though there is no consis- tent or sufficiently recognized approach, health plans are using this data to improve access to appropriate and culturally sensitive care." She affirmed that "health plans are interested in participating in a coordinated and di- rected effort to accelerate the collection of accurate race and ethnicity data. Health plans would really like a consistent approach across the industry." But, she cautioned that "there is no intentional, routine, complete, and validated collection of racial and ethnic information going on in the private sector." In her view, "if we don't really understand the scope of the prob- lem, we can't address it, I think, in a concrete way." David Nerenz reported on a demonstration project that involved 13 health plans in an examination of the collection and use of racial and ethnic data (see Nerenz and Currier, 20031. This study found that plans can get racial and ethnic data for their members and that the information can be linked to quality measurements found in HEDIS. When this was done, analysis revealed evidence of racial and ethnic disparities at the individual plan level. The project showed that plans not previously engaged in gathering racial and ethnic data could do so when they had a special opportunity and some support for it. The study also produced some unexpected findings: in some plans the disparities favore~one or more minority groups (Perot and Youdelman, 20011.
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REPORT OFT WORKSHOP 29 Carmella Bocchino of the American Association of Health Plans pre- sented the results from a review of information from 30 health plans (Bocchino and Wheeler, 20031. Sixteen of the plans were preselected be- cause they had collected racial and ethnic data in the past (whether they had been successful or had experienced numerous barriers in trying to col- lect the data); fourteen plans were randomly selected from a subset of plans participating in an annual industry survey. In the surveyed plans, enroll- ment ranged in size from 100,000 to 6 million members, thus representing a wide variety of health plans. The plans offered a mix of HMO, PPO, and point-of-service products. The health plans reviewed use a variety of sources and methods to collect racial and ethnic data, both directly and indirectly. For example, they reported using census tract results (based on the addresses of enroll- ees), satisfaction surveys (such as the CAMPS) data, or plan-initiated sur- veys. Seven of the 24 plans received racial and ethnic data directly from Medicare or Medicaid enrollment files. Six asked for race, ethnicity, and primary language information on enrollment forms. Others asked for primary language as clients entered a specialized disease management program. While health plans have accurately collected racial and ethnic data on commercial (non-Medicaid or non-Medicare) members, their strategies are limited to specific subpopulations (e.g., HMO members or members who elect to participate in specific disease management programs). Health plans have no systematic way to accurately collect data on their overall membership. Bocchino stated that "a coordinated, directed effort to accelerate the collection of accurate data would be supported by health plans and would remove many of the barriers that we found when we did these interviews . . . this involves and must include the federal and state governments. The core of this effort must be to instill or renew the public's trust that this information will be used for the benefit of health plan members . . . we really do need a very strong public education campaign to help members understand how important this data can be for their cultures." She also called for "a coordinated public and private effort to educate not only consumers, but the entire health plan and health care industry regarding legal issues and breaking down · · ~ . · .. misperceptions.
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30 IMPROVING RACIALAND ETHNIC DATA ON HEALTH Hospital Data Collection According to Romana Hasnain-Wynia of the Health Research and Educational Trust (which is affiliated with the American Hospital Associa- tion), "We do not currently have, at least within the hospitals within the United States, a systematic way of collecting data on race, ethnicity, or primary language. If you speak to four hospitals within the same region and ask them thow they collect racial and ethnic data], you are going to get Edifferent] responses from" each of them. She added that there can be con- siderable variability in how racial and ethnic data are recorded even within a facility. For example, in a hospital the main inpatient admitting office may use a procedure that is different from that used in the emergency department, an outpatient clinic, or a dedicated maternal and child health . . . clinic. Hasnain-Wynia said that hospitals need racial and ethnic data and other characteristics of their patients to assess disparities, design targeted interventions to improve the quality of care, and evaluate outcomes. Re- cently, she reported, the American Hospital Association (AMA) started a project with a consortium of six hospitals and health systems to develop a uniform framework for collecting racial, ethnic, and primary language data.17 The project is conducting site visits and working with consortium members at the six participating sites to learn about current practices. AHA will also administer a survey to all hospitals in the United States to learn how these data are currently collected and what impedes or facili- tates data collection. The project will develop procedures to collect data uniformly across the six participating sites, pilot test the procedures at the six sites, and then move from there toward actually developing and imple- menting interventions that will improve the quality of care for different population groups. AHA hopes to use this as a means to educate hospitals around the country about the importance of collecting racial, ethnic, and primary language data. These include Massachusetts General Hospital, Henry Ford Health System in De- troit, University of Pittsburgh Medical Center Health System, Northwestern Memorial Hos- pital in Chicago, Kaiser Permanente in Northern California, and Parkland Memorial Hospi- tal in Dallas.
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REPORT OFT WORKSHOP The National Committee for Quality Assurance 31 Participants reported that routine collection of services utilization data for racial and ethnic groups is currently limited to the Medicare program.18 Researchers also collect the data as a part of special health care projects. Many delivery systems, including those in managed care plans, do not routinely collect or maintain racial and ethnic data on health care utiliza- tion of services. In the cases where analysts do have data, such as from Medicare or hospital discharge records, the information is often inaccurate and incomplete. Andy Webber of the National Committee for Quality Assurance, a national nonprofit organization that accredits health care groups, talked about the work of his organization, which evaluates HMOs and "will soon be evaluating providers. This reflects a move towards placing accountability for clinical quality at the provider level. The NCQA advocates the need to coordinate public- and private-sector activity in this arena to ensure consis- tency and to reduce provider burden." One problem Webber highlighted is that "consumers currently do not understand the role of an accountable health plan, in improving, organizing, coordinating health care quality." The NCQA is considering adding a data element that requires health plans to monitor disparities of health care in their enrolled populations. Once this monitoring has been established, "we could then potentially move to requiring as CMS did of Medicare and Choice plans that specific plan- level quality improvement activities address disparities in health care." Litigation Exposure Several participants noted that private providers and insurance compa- nies are afraid that racial and ethnic data could serve as the basis for private action in court i.e., they could be sued. In the words of Nicole Lurie: It is sort of 'you are damned if you do and you are damned if you don't.' If you collect data on race and ethnicity to look at quality of care, particularly for your enrollees by race and ethnicity, are you then potentially more open to being sued in a civil rights case because you have got this data, because you have done a responsible thing and looked internally to see if you had dispari- ties? There is clearly a school of thought that says, yes, this makes me more vulnerable. On the other hand, there is a school ofthought that says if you do This information is also collected by the Indian Health Service.
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32 IMPROVING RACIALAND ETHNIC DATA ON HEALTH the responsible thing and go ahead and look at this, , it n some sense, it kind of immunizes you against those kinds of lawsuits. I think the jury is out. I did have an opportunity recently to speak with one health plan executive, who told me a really sad tale about being sued by a potential enrollee who had applied for insurance under the individual market and had been underwrit- ten out presumably because of preexisting conditions and then brought a civil rights lawsuit against the health plan. Bocchino and Wheeler (2003) reported that 15 of 24 health plans cited legal concerns among their members or the plan's legal counsel. Health plan members were concerned about how the data would be used; some worried the information would be used to discriminate against them. How- ever, if they entered a disease management program or a particular program where targeted material was developed to help them access the health care system or better comply with their therapies, then they began to under- stand how important the data could be. This view was not generally shared across the population of enrollees. Health plans surveyed by Bocchino and Wheeler (2003) suggested it would be helpful to have a public education campaign, involving members and employers, with site programs to enhance understanding of why this information has to be collected and how useful it can be to enrollees in their health care needs. Eighteen of 24 plans felt that having members understand the positive aspects of data collection would be a first step in moving forward. CONCLUSION Workshop participants considered the use of racial and ethnic data in health statistics and agreed that there is great value in collecting this infor- mation to help health plan efforts to reduce disparities and improve both the health and health care of minority groups. They reviewed the extent of collection of these data and variety of data collection methods in the pri- vate, state, local, and federal government sectors, and called for the stan- dardization of federal program collection as a prerequisite for more univer- sal private, state, and local government collection methods and reporting. In a discussion of the legal environment for the collection and reporting of such data it was noted that the collection of this information is mandated under federal law and permitted under most state and local laws. However, certain factors need to be considered in the effort to enhance the collection of racial and ethnic data. There can be significant monetary
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REPORT OFT WORKSHOP 33 and institutional costs incurred in increased record keeping and in upgraded computing capabilities. In addition, the public needs to be educated about the purposes of such data collection and convinced of its benefits and ap- propriateness. In this area participants also called for careful consideration of the implications of such data collection for the privacy of respondents. In summary, the workshop participants expressed support for racial and ethnic data collection efforts but called for stronger federal leadership. The panel will consider these and the other perspectives and issues pre- sented at the workshop as it completes its work.
Representative terms from entire chapter: