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Monitoring Changes in Health Care for Children and Families Paul Newacheck and Barbara Starfield INTRODUCTION In 1994, when the workshop on integrating federal statistics on children was held, health care reform was a leading item on the agendas of the Clinton administration and the Congress. Although federal legislative progress in this area is now uncertain, the concern of many stakeholders over access, costs, and quality of the health care system is driving change at the state level. Indeed, several states have already moved to implement health care reforms. In addition, powerful economic forces are leading to rapid changes in the organization and delivery of health care. For example, the move throughout the country to managed health care in the private sector is one indication of the kind of reform that may gather strength, with or without federal legislation. These changes and others in the health care system are the result of several factors. Paul Newacheck is at the Institute for-Health Policy Studies, University of California at San Francisco. Barbara Starfield is at the Department of Health Policy and Management, Johns Hopkins University. This paper was drafted and presented in 1994, when proposals for health care reform were being put forward and debated by the Clinton administration and in Congress. The authors have revised the text somewhat to reflect changing circumstances. However, the implications for federal statistics on children of eventual changes in the nation's health care system remain significant. 156

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MONITORING CHANGES IN HEALTH CARE 157 First, the high and rapidly growing costs of the health care system have generated concerns about the tax burdens of public programs such as Med- icaid and Medicare, threats to the competitiveness of industry as a result of the high costs of employee health benefits, high administrative costs associ- ated with a disorganized mechanism of paying for services through uncoor- dinated insurance policies, and perverse incentives for the use of unneces- sary technology. Second, access to basic health care services remains problematic for millions of people as a result of poorly distributed personnel and facilities, lack of insurance and inadequate insurance coverage for a substantial pro- portion of the population (especially children and young adults), cost shar- ing that imposes a barrier to seeking needed health services, employment insecurity and the lack of portability of insurance coverage with changes in place of employment, and the refusal of many health care providers to deliver services to individuals covered by public programs such as Medic- aid. Third, there is continuing concern about the availability, quality, and effectiveness of care as reflected by the relatively poor performance of the United States on major health indicators (especially among the young) and evidence of lack of effectiveness of many health services interventions. Fourth, persistent and perhaps growing inequities among subgroups of the population have resulted from systematic differences in access to care and quality of care, insurance mechanisms such as experience rating, in which the sickest and most disadvantaged are less able to obtain insurance, and a premium structure for health insurance that requires the least well off to pay as much as the wealthiest for their health insurance coverage. Health care reforms are likely to bring about profound changes in the manner in which children and their families in this country obtain health care. Universal coverage would give almost 10 million children who are now uninsured health insurance coverage (Snider and Boyce, 1994~. Mil- lions more would be likely to see improvements in the breadth and depth of their coverage. Others would see their coverage become more restrictive or their choice of providers become more limited. Under managed competition, the approach favored by the president and many in Congress, there would be an acceleration of the already rapid growth of managed care arrangements, such as health maintenance organi- zations and preferred provider organizations. Managed care offers impor- tant potential for reducing costs and improving access to quality care. Yet many urge caution regarding the rapid adoption of managed care because of the financial incentives to underserve patients in prepaid systems of care (Newacheck et al., 1994; Fox and McManus, 1992J. Although little research has been conducted to date on the effects of managed care on children, it is clear that customary doctor-patient relation

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158 INTEGRATING FEDERAL STATISTICS ON CHILDREN ships will be disrupted for many families as they enter organized systems of care. Proponents of managed care argue that access to primary care will be facilitated; however, it is not clear that this would be the case. Access to specialist services would almost certainly be reduced in managed care set- tings. Pediatricians would increasingly be asked to serve as gatekeepers for the service system; at the same time they would experience reduced au- tonomy in choosing courses of treatment for their patients. Beyond these direct effects on pediatric patients and providers, health care reforms carry significant indirect ramifications for families. For ex- ample, some families would see their out-of-pocket expenses for medical care decline, freeing resources for other family needs. Other families would experience increased outlays for medical care. Changes occurring under health care reform would also reverberate in the labor market. Most health care reform proposals would end the practice of imposing preexisting con- dition clauses in insurance policies. These restrictive clauses, common in health insurance plans offered through small employers, can circumscribe job mobility for families with disabled children. The effect of eliminating this practice would be profound, since 4 million American children now suffer from disabling chronic conditions (Benson and Marano, 1994~. It is less clear how the myriad special programs serving vulnerable populations of children would be affected by health care reform. The fed- eral government now helps to fund a network of over 500 community and migrant health centers across the United States. Low-income families and their children often seek care in these and other publicly sponsored health centers and clinics. In addition, the federal government currently spends upward of $500 million annually on maternal and child health block grants. The states supplement these grants with their own funds to operate a variety of programs serving low-income and other children with special needs. Federal, state, and local governments also support emergency medical services for children, regionalized systems of prenatal care, regional centers serving children with rare chronic diseases, family planning programs, and other services. The fate of these programs and others that make up the public health system remains uncertain. Monitoring and evaluating the changes that accompany health care re- forms for children, their families, and the health care system that serves them presents a formidable challenge. Fortunately, the United States pos- sesses a system for collecting and disseminating health statistics that is the envy of most other developed countries. Even so, our health statistics programs were not designed for the purpose of monitoring and evaluating health care reform. Consequently, an assessment of their utility for this purpose IS in order. In doing so, it is important to keep in mind that changes in the health care system will not affect all populations in the same manner. Children's

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MONITORING CHANGES IN HEALTH CARE 159 health needs and provider networks differ from those of adults. Children's illnesses and injuries are diagnosed and treated in the context of rapid growth and developmental processes that have no counterpart in adults. Their physi- ological, cognitive, and emotional maturation makes children uniquely vul- nerable to certain illnesses. Their developmental vulnerabilities require heightened attention to preventive care and early diagnosis and treatment of their disorders (Jameson and Wehr, 1993~. Assessment of the current fed- eral health statistics programs and the design of mechanisms for monitoring the effects of changes in the system must take into account these differ ences. In the next section, a framework is presented for assessing the types of data needed for monitoring the effects of health care reforms on children and families. DATA NEEDED FOR MONITORING CHANGES IN HEALTH CARE Evaluation of the changing health care system requires data that sys- tematically address concerns about equity, access, quality, and costs of care. Timely and reliable data are needed to support the administration and op- erations of the health care system, to measure the performance of providers, ensure quality, and support public health objectives and programs (Gaus et al., 1993). Table 1 provides a framework for considering the data elements that are required, over time, and at the different levels at which health policies and planning are generated. The table also indicates the types of data sources required to obtain the needed information. Examples of the types of data needed for monitoring changes in health care for children, families, and the health care system are presented below in narrative form. Information is needed to ascertain the state of health and functional status of the population; the adequacy of access for preventive, curative, palliative, and rehabilitative services; barriers to the receipt of care; the equity of use of services across different population groups; and the degree to which services are distributed where they are most needed. Information concerning the burden of cost sharing and the degree to which it interferes with the receipt of needed services; the extent to which the goals of conti- nuity and coordination of care are achieved; and satisfaction of the popula- tion with perceived technical, interpersonal, and organizational aspects of health service are also needed. The indirect costs of illness, such as time lost from work and school and child care costs attributable to illness, are also important. Information about the services provided is needed to ascertain the .

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62 INTEGRATING FEDERAL STATISTICS ON CHILDREN extent and type of health care needs being served; the distribution of ser- vices; the extent to which practice patterns are targeted to the needs of the population served; the extent to which they are organized to provide care that is accessible, comprehensive, continuous, and coordinated; and the ex- tent to which the services provided are justified by evidence of effective- ness and appropriateness. Information about the organization and distribution of resources within the health care system is needed in order to plan and monitor their adequacy and equity with regard to preventive services, primary care services, and consultative and referral services. Of importance are the deployment of practitioners and facilities, the mode of financing and the distribution of payments for services, the availability of primary care (for both physical and mental child health problems) and specialty services for children with chronic health problems, and the availability and deployment of special modes of intervention such as home visiting, medications, and devices where they are needed. Information concerning the costs of care provided and the sources of payments for various aspects of care is required in order to discern the degree of success in maintaining cost control within the health services system. Information is also needed to determine the balance of expenditures between primary care and specialty care as well as between preventive care and care of illness. Information is also needed to track environmental and social charac- teristics that predispose children and families to illness or interfere with efforts to ameliorate illness. Data collection strategies should be designed to provide baseline infor- mation on all of these characteristics and should be organized to monitor changes over time as health care reforms are implemented. Planning for information retrieval should be coordinated so that data collected at local levels can be aggregated to the regional, state, and federal level, and so that data collected at higher levels can be related to data collected at lower levels. This will permit comparisons to be made across health plans, geo- graphic regions, and states and will enable health planners to identify more successful models for delivery of care from ones that are less successful in meeting the objectives of reform. In the next section, the major existing sources of data are identified and evaluated against the information needs (outlined above) for evaluating changes in health care. CHARACTERISTICS OF CURRENT DATA SOURCES There are approximately 500 health, social, and demographic data projects in the U.S. Department of Health and Human Services alone. Added to

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MONITORING CHANGES IN HEALTH CARE 163 these are state and local data collection efforts, projects of private groups, and administrative and clinical databases of health facilities, plans, and insurance agencies. Evaluation of health care reforms will require a change in thinking about the locus of control for health data systems. Since both governmental and private data sources are needed to address the variety of characteristics in Table 1, a public-private partnership in developing the framework and mechanisms for data collection and analysis is a critical goal. In this section, the major federal, state, and private data collection ef- forts are presented and discussed with regard to their current contributions to knowledge as well as changes that are required in order to make them more suitable for evaluation of health care reforms. Table 1 listed the types of data sources for obtaining information from populations, providers and health care glans and health systems. Table 2 ~ ~1 , _ _ ~ 1 , provides brief descriptions of mayor databases relevant to monitoring changes in health care. And it is organized according to these types of information sources: Vital statistics and surveillance systems for obtaining population- based information concerning health status. Population surveys to obtain data concerning health status, access to services, use of services, experiences and satisfaction with various aspects of services, and both direct and indirect out-of-pocket costs of dealing with health problems. Provider surveys to obtain information on the characteristics of ser- vices used, types of services provided, distribution of facilities, and types of health conditions diagnosed. Administrative records from health plans and providers for providing information on the adequacy of arrangements for assessing health care needs of non~,l~tions served characteristics of care provided (including the bal -- rare 7 ance between primary care and specialty care, as well as between preven- tive, curative, palliative, and rehabilitative aspects of cared, the resources expended in providing care, the adequacy of organizational arrangements for achieving comprehensive, continuous, and coordinated care, documenta- tion of effectiveness of care provided, and costs generated in the provision of services. . Health systems data to determine the distribution of facilities and personnel and their type, the sources of funding for the provision of ser- vices, the distribution of expenditures by type and source of care, and total expenditures for providing care to population groups differing in the extent and type of their health care needs. An additional category of data addresses documentation of environmen

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64 INTEGRATING FEDERAL STATISTICS ON CHILDREN TABLE 2 Population-Based Data Sources for Monitoring Children's Health Status Name and Data Source/ Sponsor Methods Selected Applications of Data for Health Care Reform A. Vital Statistics and Surveillance Vital Statistics State vital Cooperative registration Program (NCHS) Linked Birth/ Infant Death Program (NCHS) Life expectancy; causes of death; infant mortality; prenatal care and birthweight; birth rates; teenage and unmarried births; family formation and dissolution; pregnancy outcomes Birth and death Infant mortality rates by birth cohort; certificates infant mortality rates by birthweight National Death Death certificates Index (NCHS) Facilitates epidemiologic follow-up studies; verification of death for individuals under study; most NCHS surveys are linked to NDI Youth Risk Self-administered Assessment of changes in health Behavior questionnaire in practices over time Surveillance schools System (CDC) B. Population Surveys National Health Personal Large-scale data set with ability to Interview Survey interviews establish trends in access, utilization, (NCHS) and health status National Health Personal Health status; chronic conditions; Interview Survey interviews behavioral problems; learning and on Child and developmental problems; birth Family Health characteristics (NCHS)

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MONITORING CHANGES IN HEALTH CARE 165 Child/Family Planned Overall Sample Sample Periodicity All births, deaths, All births, deaths, Annual and fetal deaths; and fetal deaths; sample of sample of marriages and marriages and divorces; divorces; termination of termination of pregnancy for pregnancy for selected selected reporting reporting areas areas All U.S. births All U.S. births Annual and infant deaths and infant deaths All deaths All deaths Annual occurring among children Nationally Only adolescents Every 2 representative surveyed; years sample of students comparable but in grades 9-12; unlinked survey state-level data data for adults available 50,000 households Approximately Annual; 30,000 children insurance and under 18 years access surveys plus family added in 1993 members One child from each NHIS household 17,000 children (in 1988) under 18 years plus linked data on other family members Every 7-8 years; planned for 1996 if funding available continued on next page

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166 TABLE 2 Continued INTEGRATING FEDERAL STATISTICS ON CHILDREN Name and Data Source/ Selected Applications of Data Sponsor Methods for Health Care Reform National Maternal Follow-back using, Factors associated with low birthweight Infant Health state vital records; and infant death; barriers to prenatal Survey (NCHS) interviews of care; effects of maternal risk factors mothers; hospital on pregnancy outcomes medical records; prenatal care providers National Survey Personal Contraception and sterilization; teenage of Family Growth interviews; sexual activity and pregnancy; family (NCHS) telephone planning and unintended pregnancy; interviews adoption; infertility National Health Personal Physical health; clinical findings; and Nutrition interviews; growth and development Examination physical Survey examinations; laboratory tests National Medical Multiple personal Linked data on access, utilization, Expenditure interviews; health status, and expenditures Survey provider record (AHCPR) checks; insurance policies analysis National Personal interviews Longitudinal tracking of health status Longitudinal Survey of Youth Child Data (DOL and NICHD) Early Childhood Personal interviews Longitudinal tracking off access, Longitudinal with parents and utilization, and health status Survey children; school (NCES) questionnaire; teacher questionnaire

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MONITORING CHANGES IN HEALTH CARE 181 ever, existing databases (with the exception of systems surveillance data) are designed for the most part to provide information at the level of the individual patient or consumer. They are generally less suitable in their current form for assessing outcomes aggregated at the level of families, communities, and systems of care. Additional efforts will be required to assess outcomes at these aggregate levels. For example, there is a need for family-level identifiers in all household-based health surveys. In some surveys, such as the National Health Interview Survey, it is currently very difficult to identify records for parents of sample children, making family- level analysis all but impossible. Other surveys, such as the Current Popu- lation Survey, include family-level records and identifiers. Yet even in this dataset, it can be difficult to identify relationships among family members, especially in multigenerational households. Much more work is required to assess effects at the community level. As a starting point, geographic identifiers are needed in national surveys to link systems surveillance data, such as that available in the Area Resource File, to population data. In the past, strict interpretation of confidentiality provisions have precluded such linkages. Although confidentiality must be respected, a review of policy in this area is called for. Timeliness In gauging the impact of health care reforms, policy makers, research- ers, advocacy groups, and others will require timely information. Speedy acquisition, processing, and release of data are also essential if the monitor- ing system is to provide an early warning of problems or unintended conse- quences of reform. Hence, the implementation of reforms will increase pressure on sponsoring agencies to speed the collection, processing, and release of data. The pressure will be greatest for the larger, more complex survey efforts, such as the National Medical Expenditure Survey. This survey involves multiple personal interviews, diaries, and verification of expenditures through record checks. Partly as a consequence of the enor- mity of this undertaking, the 1977 and 1987 editions of this survey were largely outdated by the time processing was completed and data were re- leased. Trade-offs are always present between precision of data and production time. These competing needs must, of course, be balanced. One approach to addressing this issue is to develop a monitoring system that combines quick turnaround descriptive data for surveillance purposes with more pre- cise but necessarily more slowly produced data for analytic and evaluative purposes. Taking this approach, data from large-scale population and pro- vider surveys would be used for in-depth analysis and evaluation of health care reform. A complementary tracking system, based on rapid turnaround

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82 INTEGRATING FEDERAL STATISTICS ON CHILDREN data sources, would be created to provide an early warning of problems and unintended consequences. The tracking system should be designed to pro- vide rapid release information on a continuous basis as reform is imple- mented. Information for the tracking system could be derived from a com- bination of administrative data, public health surveillance data, and telephone survey data. Administrative data would be derived from health plans, claims payment systems and other sources. Public health surveillance data would come from existing and new surveillance efforts organized by the Centers for Disease Control and Prevention, as well as state and local public health agencies. Telephone surveys would provide immediate data on access bar- riers, satisfaction with care, and other indicators not available from admin- istrative and public health surveillance systems. A capacity to conduct rapid turnaround telephone surveys is now being developed at the National Center for Health Statistics (NCHS, 1993~. However, new funding would be required to implement such a program. Meeting Descriptive and Analytical Needs It is necessary for the monitoring system to provide information for both descriptive and analytical purposes. The objective of descriptive stud- ies is to describe a phenomenon of interest, whereas the purpose of an analytical study is to explain the phenomenon (Aday, 1989; Moore, 1993J. Descriptive data are needed to profile the status of children, families, and communities as well as providers and systems of care under health care reforms. Data are also needed for analytical purposes, such as unraveling relationships among variables or explaining trends. For example, the fed- eral and state maternal and child health agencies may be interested in as- sessing whether and how patterns of care change for chronically ill children after health care reform is implemented. A descriptive profile of utilization patterns could be created from population and provider surveys and admin- istrative records. If chronically ill children's utilization patterns were found to change substantially after implementation of reform, there would be a clear need to move beyond description of the changes to an explanation of whether the changes were caused by reforms or other factors, and which specific factors were responsible for them. Data for both descriptive and analytical purposes are essential, but da- tabases must be designed carefully if they are to meet both needs. Typi- cally, more depth is needed within a topic area for analytical studies, whereas descriptive studies are often facilitated by fewer, carefully chosen mea- sures. Hence, trade-offs can exist in meeting descriptive and analytical needs. One of the objectives in designing a monitoring system is balancing these needs.

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MONITORING CHANGES IN HEALTH CARE Capacity to Assess Change 183 Assessment of change is fundamental to monitoring the impact of health care reform. Ideally, a monitoring system should have the capacity to provide information on changes occurring for children, families, and com- munities as well as providers and systems of care across multiple domains (access, utilization, expenditures, health status, health resources, quality, and effectiveness of care). Two analytical approaches can be taken to measure change. First, data collected on a periodic basis can be analyzed and compared over time. For example, health insurance data from the Current Population Survey are fre- quently compared over time to assess changes in the number and proportion of uninsured persons. For such comparisons to be meaningful, at least certain items in the questionnaire must remain constant, since even small changes in questionnaire wording can have significant effects on survey responses. An example of this problem can be seen in the 1981 and 1988 Child Health Supplements to the National Health Interview Survey. Both supplements contained a checklist of child health conditions. Although the wording for many condition entries remained the same, the wording for others changed precluding comparisons of prevalence over time. Although it is sometimes possible to estimate the impact of wording changes when questionnaires are changed, doing so is difficult and requires special atten tion. The second approach consists of assessing changes over time within a panel of subjects (e.g., children, families, practitioners). In this case, the same subjects are followed with measures of interest collected at regular intervals. Panels can be created from samples obtained from vital statistics (e.g., birth records), administrative records (e.g., claims records ), or survey samples. The panel approach is used most often in the survey context. Although a powerful tool for assessing and analyzing change, panel surveys have been used only occasionally in child health. The most well- known panel surveys, including the Survey of Income and Program Partici- pation and the National Longitudinal Survey of Youth, have limited health content. The few examples in the child health field include the National Survey of Family Growth and the National Maternal and Infant Health Survey, both sponsored by the National Center for Health Statistics. With the exception of these surveys, which have very specific purposes and lim- ited target populations, there are no ongoing panel surveys of children's health. Two promising possibilities for panel surveys are now being planned that could be of enormous value in monitoring health care reforms. First, the National Center for Health Statistics is considering conducting a child and family survey as part of the National Health Interview Survey. This

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184 INTEGRATING FEDERAL STATISTICS ON CHILDREN comprehensive survey of child and family health would be modeled after the very successful 1988 National Health Interview Survey on Child Health. Like its predecessor, the new survey could collect in-depth information on pregnancy and birth, injuries, impairments, acute and chronic conditions, developmental and learning and behavioral problems, use of health ser- vices, and participation in health programs such as the Supplemental Food Program for Women, Infants, and Children, Medicaid, and Healthy Start. In addition, the planned survey would include several indicators of family functioning. If a panel or follow-up component was added, the survey could be an extremely valuable tool for assessing the effects of health care reforms on children and families. However, it is not clear at present whether even the baseline for this important survey will be fielded. The costs of this survey must be met externally by agencies interested in the survey results, and so far only limited funding has been committed. Unless additional funding becomes available soon, survey planning will be abandoned. The second promising panel survey is the Survey of Program Dynam- ics, now being fielded by the Bureau of the Census. This survey includes a panel of 20,000 households first assembled in 1993 as part of the Survey of Income and Program Participation. The households will be followed over a 10-year period, with household interviews conducted annually or more fre- quently. As envisioned by its planners, the survey would focus on provid- ing an information base for policy makers and researchers interested in welfare reform and health care reform issues. Initial funding has been provided by federal agencies interested in welfare reform, but so far no funding has been provided for the health care reform component. Capacity to Measure Short- and Long-Term Effects Health care reforms are likely to bring about a myriad of changes in the organization, financing, and delivery of care. Some of these changes will begin occurring during implementation or shortly after reforms are imple- mented; others will occur much later. For example, changes in access and utilization of care could be expected to occur soon after implementation of a reform. In contrast, changes in child health status, if they occur, are likely to become apparent only years later. Hence, the monitoring system must be capable of capturing changes occurring over the short and the long term. As reforms are implemented at the state level, there are likely to be policy adjustments in eligibility, benefits, cost-sharing, and other compo- nents especially during the early years of reform and perhaps on an ongoing basis, if past experience with Medicaid and Medicare can serve as a guide. Consequently, the "effects" of reform are likely to change over time, as policy makers fine-tune various elements of the health care reform plan.

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MONITORING CHANGES IN HEALTH CARE 185 The monitoring system should then be designed with recognition of the temporal and ongoing nature of change. This means a monitoring system based on a simple "before and after" design will provide only partial and perhaps misleading conclusions concerning the effects of reform. Instead, the monitoring system should be conceived as an ongoing activity with continuous collection of outcome data. Provision of Adequate Geographic Detail Most major federal health data bases were originally designed to pro- vide national or regional level estimates. State-level data will be critical in evaluating health care reforms, since reform is likely to be implemented differently in each state (and perhaps only in selected states). Indeed, as we've said, even without national health care reform, states are already beginning to implement their own reform agendas. Consequently, state- level data represent a key component of the monitoring system. All states maintain vital records and many maintain data collection systems for hospi- tal discharge information. Claims payment systems are also maintained by every state Medicaid agency, although not all lend themselves to analysis. A few states have also developed household survey databases (Hawaii, Rhode Island, Puerto Rico), and all states participate in the behavioral risk factor surveys sponsored by the Centers for Disease Control and Prevention. However, no state currently has a data system in place that is capable of assessing the broad range of effects shown in Table 1. Moreover, none of the major federal health surveys currently has the capacity to assess the effects of state-level reform efforts on children and families. Two survey design considerations are particularly relevant to producing state-level estimates from national surveys. First, the sample design, par- ticularly the selection of primary sampling units, must be developed in a manner that is consistent with state-level estimation. In the past, major health surveys, such as the National Health Interview Survey, have selected primary sampling units that overlap state boundaries or have excluded some states entirely. This is now changing at least in some surveys. For ex- ample, the 1995 redesign of the National Health Interview Survey will in- clude only primary sampling units that do not cross state boundaries, and all states will be represented for the first time. Second, there must be a suffi- cient number of cases at the state level to permit accurate estimation. Even in large household surveys, such as the National Health Interview Survey, there are insufficient numbers of observations in all but the largest states to permit useful state-level estimates. To a degree, this problem can be cir- cumvented by combining multiple years of survey data. However, this strategy will have limited applicability to small states. Other approaches,

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86 INTEGRATING FEDERAL STATISTICS ON CHILDREN such as supplementing household interviews with telephone interviews, need to be considered. Over the long term, federal efforts should also be directed toward im- proving capacity at the state and local levels to conduct surveys, make better use of claims data and other administrative databases, and develop standards and conventions for sharing data between levels of government. The National Center for Health Statistics, with its long history of cooperat- ing with states on the development of uniform standards for vital statistics, may be well suited to leading this effort. With health care reforms in place, there will be a much greater need for coordinated information at the local, state, and national levels. As indicated earlier, data collection and retrieval need to be coordinated so that data collected at the local level can be aggregated to the state and federal level, and so that data collected at higher levels can be related to data collected at local levels. Doing so will permit comparison of effects across communi- ties, states, and the nation. Capacity to Assess Outcomes for Vulnerable Populations The monitoring system should have a built-in capacity for assessing outcomes for vulnerable child populations, including children living in poor and near-poor families, minority children, children in out-of-home place- ments, and children with disabilities and other ongoing health problems. These vulnerable populations are likely to be affected more signifi- cantly by health care reform than other populations. Consequently, there is a heightened need to closely monitor their welfare as reforms are imple- mented. Yet it is difficult to identify these children in vital records, admin- istrative records, and public health surveillance systems. In surveys, sample sizes for these populations are often too limited for meaningful analysis. In the past, sample size problems have plagued analysis of health survey data for minority populations. During recent years, survey designers have im- proved capabilities in this area through oversampling of minority popula- tions. For example, the National Health Interview Survey currently oversamples blacks and will begin oversampling Hispanics in 1995. However, difficul- ties remain in analyzing other vulnerable populations. Two populations of particular concern are children residing in institu- tional settings and homeless children. Virtually all ongoing health surveys exclude children residing in institutions. Even the 1990 decennial census data on the institutionalized population lacks the specificity needed to esti- mate the number of children residing in institutions for health-related rea- sons. Even less information is available on homeless children and families. This population is routinely excluded from national household surveys and other data systems, even though local surveys have demonstrated significant

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MONITORING CHANGES IN HEALTH CARE 187 unmet health needs exist for homeless children and families (Wood et al. 1 990a, 1 990b). Emerging Issues It is not possible to accurately predict the direction or timing of health care reform, or its effects, especially unintended consequences. As a result, flexibility in data collection will be necessary. During recent years, many ongoing surveys have adopted a modularized approach, whereby a core questionnaire is supplemented with modular questionnaires on topics of current interest. This provides an effective means for maintaining flexibil- ity in data collection. Unfortunately, the fielding of a "supplement" often depends on the availability of special funding for it. As a result, supplements generally reflect the interests of specific groups that have the resources to offer. For this reason, children have only infrequently been the subject of these added modules. To adequately monitor the effects of health care reform on chil- dren and families, an in-depth child and family supplement should be con- ducted at least every five years and preferably every three years as part of the National Health Interview Survey. Doing so would provide the flexibil- ity needed to address emerging issues for children and families. Integrating Data Collection Efforts ()ver time, federal databases have become increasingly specialized and categorical in nature. The result is that few databases contain data across the multiple domains relevant to health care reform (access, utilization, expenditures, health status, health resources, effectiveness, and quality of care). Consequently, the monitoring system will be required to draw on multiple data sources. Its capacity for assessing the effects of reforms will be enhanced to the extent that data from the different databases can be integrated. Integrating or linking data from various sources offers the added advantage of increasing the utility of existing data bases at a relatively modest cost (AHCPR, 1991~. Integrating data can occur at several levels. At the most basic level, databases should share common definitions and terminology whenever pos- sible; unfortunately, this happens less frequently than is desirable. For example, the National Health Interview Survey, the National Medical Ex- penditure Survey, the Current Population Survey, and the Survey of Income and Program Participation use different questions for assessing health insur- ance coverage. This makes it very difficult to compare results across sur- veys, or even to develop agreed-on estimates of the size of the insured and uninsured populations. Even commonly used terms such as access have

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188 INTEGRATING FEDERAL STATISTICS ON CHILDREN imprecise meanings and varying representation in data collection efforts. The National Committee on Vital and Health Statistics should perhaps be given the responsibility for coordinating efforts to define important terms so that they can be measured in consistent ways. Linking data across databases can yield significant benefits but presents additional challenges. Recently, much attention has been focused on link- ing administrative records such as claims payment data to national survey data. For example, data on utilization and expenditures from Medicare administrative files are linked to population-based survey data in the Medi- care Current Beneficiary Survey. Similarly, the National Death Index now permits linkage of death certificates to most of the population surveys spon- sored by the National Center for Health Statistics. The challenge ahead lies in integrating databases across federal agencies as well as between public and private data collection organizations. Linkages of administrative data with survey data could provide a pow- erful mechanism to explore the relationship between services provided and resulting health status in the geographic area served by health services orga- nizations and plans. Accomplishing this level of integration requires close cooperation among the sponsors of the databases. This has not always been possible in the past because of confidentiality issues, as well as concerns such as funding and turf. Health care reform will mean that new efforts toward integrating databases will be essential. CONCLUSION A carefully designed data collection and analysis strategy is central to assessing the impact of the changing health care system on children and families. In previous sections of this paper we presented a framework for assessing data needs, reviewed existing databases, and articulated the at- tributes of an effective monitoring system. All of this needs to be consid- ered within an overall strategy for monitoring health care reforms. Too often data collection and analysis efforts are divorced, resulting in missed opportunities and inefficient use of resources. Data collection strategies must be developed in conjunction with a data analysis strategy. The data collection and analysis strategy should be driven by a clear understanding of the key health care reform issues. The specifics of that strategy and the monitoring system that will support it should be developed using a process that takes into account the needs and views of policy makers, the scientific community, child health advocates, and others concerned with the well- being of children. The strategy of planning for data to monitor and assess changes in health care faces four types of challenges:

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MONITORING CHANGES IN HEALTH CARE 189 Concept development. As the country moves toward primary care and toward outcome and functional status assessment, concerted attention will be needed to clarify the meaning of these concepts, especially as they relate to children, so that approaches to measurement can be developed. Standardized measurement. At present, the many different data sys- tems and data sets use different criteria to measure the same concept. Im- portant goals of health care reform, such as improving access and quality of care, are currently being measured in many different and incompatible ways. Once the concepts of access, quality, primary care, and health and func- tional status are clarified, attention must be devoted to developing consis- tent or at least compatible ways of measuring them. Personal identifiers with maintenance of confidentiality. Since per- son-focused (rather than disease-focused) health care requires the tracking of events over time and places for each individual in the population, a method of assigning unique personal identifiers that maintains confidential- ity will need to be developed and instituted. Responsibility and accountability. Timely and accurate information is needed to ensure that changes consequent to health care reforms proceed in the anticipated direction. In an ideal world, a system for monitoring health care reforms would be designed and implemented without regard to budget constraints. Realisti- cally, limited additional funds are likely to be available for the monitoring system. Consequently, there is a need for careful consideration of the marginal costs and marginal benefits of adding components to the monitor- ing system. As much as possible, the system should rely on existing data bases, modifying them when necessary but keeping in mind their original purposes. Fortunately, the nation already possesses a rich set of health databases that can be used for monitoring health care reforms. With careful planning and coordination, the vast number of current surveys might even be reduced, thus releasing resources that could better be applied to obtain- ing data of better quality with more rapid availability. Such planning will be required to develop a system capable of accurately and economically assessing the effects of health care reform in a timely fashion. REFERENCES Aday, L. 1989 Designing and Conducting Health Surveys. San Francisco: Jossey-Bass Inc. Agency for Health Care Policy and Research (AHCPR) 991 Report to Congress: The Feasibility of Linking Research-Related Data Bases to Federal and Non-Federal Medical Administrative Data Bases. AHCPR Pub. No. 91-0003. Rockville, Md.: AHCPR.

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190 INTEGRATING FEDERAL STATISTICS ON CHILDREN Benson, V., and M.A. Marano 1994 Current Estimates from the National Health Interview Survey. Vital Health Statis- tics, Series 10, Number 189. Hyattsville, Md.: National Center for Health Statis- tics. Edwards ,W.S., D.M. Winn, and V. Kurlantzick et al. 1994 Evaluation of National Health Interview Survey Diagnostic Reporting. Vital Health Statistics, Series 2, Number 120. National Center for Health Statistics. Fox, H.B., and M.A. McManus 1992 Medicaid Managed Care Arrangements and Their Impact on Children and Adoles- cents: A Briefing Report. Washington, D.C.: Fox Health Policy Consultants. Gaus, C., J. Scanlon, and M. Ross 1993 A New Information Framework for Health Care Reform. Presented at the Annual Meeting of National Association of Health Data Organizations, Washington, D.C., December 9. Jameson, E., and E. Wehr 1993 Drafting national health care reform legislation to protect the health interests of children. Stanford Law and Policy Review Journal 5(Fall): 1. Lamberts, H., and M. Wood, eds. 1987 International Classification of Primary Care. World Health Organization of Na- tional Colleges? Academies, and Academic Associations of General Practitioners/ Family Physicians. Oxford: Oxford University Press. Leginski, W., C. Goze, F. Driggers, S. Dupman, D. Geersten, E. Kamis-Gould, M. Namerow, R. Patton, N. Wilson, and C. Worster 1989 Data Standards for Mental Health Decision Support System. DHHS Pub. No. (Adm) 89-1589, FN-10. Washington, D.C.: U.S. Department of Health and Hu man Services. Moore, K. 1993 Children and Families: Data Needs in the Next Decade. Presented at the inter agency Family Data Working Group meeting, Washington, D.C., May 25. National Center for Health Statistics, Centers for Disease Control and Prevention 1993 Surveys for Monitoring Health Reform. Presented at the AHSR/FHSR annual meeting, June 27-29. Newacheck, P., D.C. Hughes, J.J. Stoddard, N. Halfon 1994 Children with chronic illness and Medicaid managed care. Pediatrics 93(3):497- 500 (Commentary). Snider, S., and S. Boyce 1994 Sources of Health Insurance and Characteristics of the Uninsured: Analysis of the March 1993 Current Population Survey. EBRI Issue Brief Number 145. Washington, D.C.: Employee Benefit Research Institute. Starfield, B. 1973 Health services research: a working model. New England Journal of Medicine 289: 132- 136. 1992 Primary Care: Concept, Evaluation, and Policy. New York: Oxford University Press. Wood, D.L., R.B. Valdez, T. Hayashi, and A. Shen 1990a Homeless and housed families in Los Angeles: a study comparing demographic, economic and family function characteristics. American Journal of Public Health 80: 1049-1053. 1990b A study comparing the health of homeless children and housed, poor children. Pediatrics 86:858-866.

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MONITORING CHANGES IN HEALTH CARE 191 World Organization of National Colleges, Academies, and Academic Associations of General Practitioners/Family Physicians (WONCA) 1979 International Classification of Health Problems in Primary Care. ICHPPC-2, 2nd Ed., Oxford: Oxford University Press. Wunderlich, G., ed. 1992 Toward A National Health Care Survey. Panel on the National Health Care Sur- vey, Committee on National Statistics, National Research Council. Washington, D.C.: National Academy Press.