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Executive Summary The nation's health care system has changed dramatically during the past two decades. Health policy makers and researchers have a compelling need for more and better data on a number of issues if they are to under- stand and solve the current health care problems facing the nation. The national health statistical systems have not kept pace with the changing and increasing demand for information that this rapidly evolvin;, health care delivery environment has generated. The gaps in information on a wide array of issues concerning health are growing. The current national data systems are becoming outdated. They do not provide the information need- ed to allow researchers and policy makers to assess adequately the effect of changes in the financin,, organization, and delivery of health care, or the impact of other social and economic trends, on the appropriateness, quality, costs, and outcomes of care. Recognizing that existing national data systems need to be more re- sponsive to the changes occurring in the health care system, the National Center for Health Statistics (NCHS) in the U.S. Public Health Service is developing a plan for restructuring its existing surveys of health care pro- viders and service settings) into what it has chosen to call an integrated National Health Care Survey. Under its plan the National Health Care iThe surveys are the National Hospital Discharge Survey, the National Ambulatory Medical Care Survey, The National Nursing Home Survey, and the National Master Facility Inventory.

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2 TOWARD A NATIONAL HEALTH CARE SURVEY Survey will build on the existing provider surveys, which will be merged and expanded over time and geographically linked with the National Health Interview Survey (NHIS). The aim of this proposed new survey is to pro- vide a more complete and useful picture than now exists of the provision of medical care in the United States. The main features of the NCHS plan are: . To conduct the survey on an annual basis; ~ To expand the coverage of types of health care providers and health service settings to include hospital emergency and outpatient de- partments, ambulatory surgery centers, home health agencies, and hospices; To revise the sample design using a three-stage cluster design in which a subset of the primary sample of the NHIS will be used to select the sample for the independently designed provider-based surveys; and To develop a capability to conduct follow-up studies to examine issues related to outcome and subsequent medical care. NCHS requested that the National Academy of Sciences and the Insti- tute of Medicine convene a panel of experts to evaluate their plans for the National Health Care Survey. The panel was asked to undertake two majo tasks in this evaluation: (1) Identify the principal current and future needs for health care data by public and private policy makers, health care providers, health service researchers, and others and (2) Determine the extent to which the proposed survey can meet identi- fied needs for data given the statistical aspects of the proposed survey, such as sample design, sample size, data collection meth- ods, and data sets. This report responds to this request. It reviews the main features of the proposed survey from two perspectives: the extent to which the survey would enable NCHS to meet the changing data needs associated with the health care polio; Issues identified by the panel, and the technical features of the plan in its con nt stage of development. It goes beyond a simple review of NCHS plans, however, to suggest a broader strategy for the surveys that the panel believes will more nearly meet the needs of the health care system. The panel's major findings and conclusions based on this review and its deliberations are summarized below, followed by the text of its recommen- dations.

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EXECUTIVE SUMMARY 3 FINDINGS AND CONCLUSIONS In reviewing the key features of, and developments in, health care and the array of national health data sources available, it became clear to the panel that, although there is an abundance of data collection activities in this nation, they often are uncoordinated and are sometimes duplicative. Moreover, they do not provide the full range of statistical information need- ed to monitor and evaluate changes in the availability, financing, and quali- ty of health care in order to meet today's challenges, let alone the challeng- es of the next century. It also became clear to the panel that no single survey is likely ever to meet all the criteria, address all the technical problems, or meet all users' needs for data. In order to be able to meet future demands for informa- tion, a coordinated and integrated system of health care data collection activities involving several organizational entities is required. Collective- ly such a data system should be flexible enough to adapt to the changes in the health care system as they occur and to meet special needs on an ad hoc basis. NCHS Plan for a National Health Care Survey The panel commends NCHS for taking the first steps in restructuring and expanding the existing health provider surveys to enhance the amount and kind of information available about health care events. The panel endorses the concept of a National Health Care Survey integrated with the National Health Interview Survey to monitor the nation's health, illness, and disability; the use of and costs of care by incident and episode; and the outcomes and cost-effectiveness of the services provided. Such monitoring and evaluation should broadly examine both general and mental health and related disabilities. The panel has reviewed the main features of the survey as proposed in the NCHS plan. In its judgment the plan in its present stage of development does not provide the capacity to address important questions about the in- terrelationships between the health status of individuals and the patterns and cost of health care services they receive from a broad range of health care providers and service settings over time. Therefore the panel believes that it is important for it to provide guidance that would redirect the plan- ning process. The timing is also opportune, since NCHS is currently in the midst of planning the 1995 redesign of NHIS, which will affect NHIS data collection for several years. NCHS should take into consideration the pan- el's recommendations relating to their plans for the proposed National Health Care Survey in reaching final decisions on the NHIS redesign. The panel's major findings and conclusions follow:

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4 TOWARD A NATIONAL HEALTH CARE SURVEY . . The panel supports the annual data collection schedule planned by NCHS, but it is concerned about further reducing the already small sample sizes to offset increased costs. Such action will further aggravate the existing problems of producing estimates for subpop- ulations, for rare diseases and diagnoses, and for subnational lev- els. NCHS proposes to address that problem by aggregating data over more than a year. Such multiyear aggregation of data may be less appropriate for characteristics that are not stable across years. It will also affect the timeliness of data production and analysis. Moreover, the panel seriously doubts the possibility of producing small-area estimates even with the proposed aggregation of data over multiple years. The panel endorses the center's plan to extend coverage of the health care provider surveys to include additional health care set- tings that have emerged in recent years. However, further exten- sions are needed to include a fuller range of providers than current- ly planned both physicians and nonphysicians. Examples of these would include dentists, psychologists, occupational therapists, phar- macists, podiatrists, chiropractors, nurses, nurse practitioners, phy- sician assistants, nurse midwives, and optometrists, all of whom deliver some form of health care. The panel also finds the exclu- sion of federal hospitals and long-term care hospitals a serious de- ficiency in the present plan. Although the panel is in general agreement with the topics current- ly included in the health care provider surveys, it finds the content inadequate to meet the data needs for the current and future health care policy issues. Some of the key issues not addressed in the center's plan are summarized below: InfoITnation on longitudinal dimensions of care is of critical importance to assess the effects of treatment, but current data sets do not permit data aggregation to ::: pict meaningful pat- terns of care over time. Person-based did - are needed on health care received by individuals over time arid over the entire pro- gression of an episode of illness. The cost of care is one of the most, if not the most, important health policy issues confronting the nation today, yet hardly any information is collected by NCHS in the health care provider surveys on payers or health care costs aIld expenditures, includ- ing the component paid by insurance. Section 306 of the Public Health Service Act, which provides the statutory mandate for NCHS, lists the specific areas in which statistics are to be col- lected. These mandated areas cover health resources, the utili-

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EXECUTIVE SUMMARY s zation of health care, and health care costs and financing, in- cluding the trends in health care prices and costs, the sources of payments for health services, and federal, state, and local gov- ernment expenditures for health care. Data on readmissions to hospitals and multiple visits to ambula- tory care settings are not available because the information ob- tained is on discharges and visits in the provider surveys and not on persons. A major limitation, not only of NCHS surveys but of virtually all data sets about health care services, is the lack of detailed information on the tests and services performed during the vari- ous treatment events. The addition of such data from medical records or charts to the content of the survey is critical to re- search related to the appropriateness of care, the outcomes and efficacy of treatments, and the costs of treatment. As stated earlier, a central feature of the center's plan is to link geo- graphically the sample selection of the provider surveys with the sampling design of the NHIS by using a subsample of the NHIS primary sampling units to select the samples for the independently designed provider surveys. NCHS has identified several potential advantages of the revised design: The panel concludes that there may be some practical advantages to having the provider surveys and the NHIS conducted in the same primary sampling units (PSUs). There may be efficiencies in shar- ing data collection staff, although the real benefits cannot be as- sessed until the actual strategies for data collection are fully in place. Furthermore, the assumed cost saving of having, the health care providers geographically clustered needs to be demonstrated. The trade-off between reduced costs through use of a clustered provider sample and the impact of this design on the efficiency of the sample also needs to be examined in greater detail. . . NCHS has given considerable thought to the concept of an integrat- ed National Health Care Survey and has presented arguments that its plan implies integration. Although the panel supports the use of the NHIS PSUs as an important first step, it emphasizes that simply conducting the provider surveys in the NHIS PSUs does not by itself result in a meaningfully integrated survey. The panel is skeptical about the assumptions of increased analytic utility resulting from geographic linkage, and it doubts there is benefit in defining the PSUs in terms of health service areas. There are several problems associated with the definition of health ser-

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6 TOWARD A NATIONAL HEALTH CARE SURVEY . vice areas across a range of health services and health care provid- ers that need to be researched before the utility of this kind of analysis can be assessed. The health service area concept, of course, can be used in analyses of NCHS survey data without using the concept to define PSUs. The NCHS plan for a National Health Care Survey includes devel- opment of the capability to conduct routine and specialized patient follow-up studies of the sample event visit, discharge or admis- sion to obtain information beyond what is available in provider records. Although the follow-up design described by NCHS poten- tially adds somewhat to the value of the data currently being col- lected, in the panel's judgment the key issue is the appropriateness of an event-based sample for follow-up studies. A major limitation of the National Health Care Survey as presently designed is that all the provider surveys begin with a sample of events and not with a sample of persons. This is not an efficient design for pro- ducing person-based statistics. Many health conditions produce multiple visits to an ambulatory care setting; NCHS needs to deter- mine the extent of the confounding problem resulting from the use of an event-based survey. There are also statistical problems that need to be resolved, arising from the fact that an individual's chance of selection in the sample depends on the number of health care events he or she had for the condition. In conclusion, the panel endorses the primary objective of the planned survey "to produce annual data on the use of health care and the outcomes of care for the major sectors of the health care delivery system. These data will describe the patient population, medical care provided, financing, and provider characteristics." The panel is concerned, however, that, as cur- rently designed, the survey appears to be limited mostly to modest modifi- cations and expansions in coverage and content of the existing health care provider surveys with minimal, if any, true integration of design or data. If the center's objective is to move in the direction of an integrated survey design to provide comprehensive health care data that are urgently needed, especially on the key dimensions of access, expenditures, illness episodes, and outcomes, in the opinion of the panel, it must move beyond the event- based sampling procedures that are proposed in its plan. Design Framework for a National Health Care Data System In reviewing the features of the NCHS plan, the panel concludes that, even taking the panel's recommendations for changes and improvements in

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EXECUTIVE SUMMARY 7 the current plan into account, the center's vision for a National Health Care Survey falls short of meeting anticipated information needs for the critical years ahead and into the next century. Long-term strategy requires consid- eration of further, more fundamental restructuring of the surveys to produce ~ man that is flexible enough to adapt to changes and to new and rapidly emerging needs for health care data. Such a strategy requires a more inte- grated and a more visionary course of action than currently set forth by NCHS. As stated at the outset, no one survey can meet all the requirements and provide answers to all the important health care questions, but consider- ably more can be done than has been proposed by NCHS thus far. The panel believes that there is need to develop an integrated data system with linkage capability at the individual level that includes a variety of approaches, including surveys of specific types of health care providers and neaten care settings, follow-up of individuals seen for specific condi- tions by specific types of providers in specific settings, longitudinal surveys of the household and nursing home populations, and possibly surveys of episodes of illness. In addition, there is need for improved collaboration, coordination, and integration of health care data collected by NCHS and by other agencies of the U.S. Department of Health and Human Services. The panel therefore recommends a more ambitious course of action that will provide the basis for a flexible, long-term data collection strategy, one that encompasses most of the features of the present NCHS plan, but that calls for a significant long-term expansion in the breadth and depth of information to be gathered through a truly integrated National Health Care Data System. This report presents the panel's strategy for achieving these objectives, not so much as a specific design but as a design framework for an integrat- ed National Health Care Data System within which a variety of survey approaches linked to the NHIS can be developed, and from which a broad range of health-related information needs can be met. This approach would provide not only new data, but also a basis for linkage of data on a popula- tion-based sample of individuals with data on their health care providers. The panel believes that, taken as a totality. its recommended course of A, action represents the appropriate and preferred direction for the National Health Care Data System. The panel's proposed design framework has four key elements: (1) Changing the origin of the provider samples from listings of pro- viders and service settings developed and maintained by NCHS to identification of providers and service settings by respondents to the NHIS (at least for those health care providers not currently included in the provider inventories maintained by NCHS). This NHIS-based approach offers rapid identification of emerging health care providers and service settings, which is just not possible with

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8 TOWARD A NATIONAL HEALTH CARE SURVEY the current approach of developing and maintaining national inven- tories for given types of providers to serve as sampling frames. (2) Sampling from the NHIS respondents to gather longitudinal per- son-based data on the health status and health care sought and re- ceived by individuals, including what services were provided by which providers, along with the associated costs and expenditures. (3) Modifying the sampling design of the National Nursing Home Sur- vey (NNfIS) to collect longitudinal data from the institutionalized population on health care utilization from providers other than the nursing home. (4) Generating a sample of episodes of illness from respondents to the NHIS and the NNHS. These respondents with an episode of illness will be followed over a period of time to collect data from both the respondents and their health care providers on the process of health care, the utilization of providers, and costs and expenditures associ- ated with the episode. The panel recognizes that, despite its many potential benefits, adoption of the recommended design framework raises several important issues on various aspects that would require careful examination and resolution as to feasibility and costs prior to making final decisions on the details of the design. Many of the issues identified are related to some of the screening and patient follow-up procedures. Perhaps the most important pertain to the ability: (1) to identify visits to specific providers, (2) to obtain information making possible contact with identified providers, (3) to obtain permission from patients to contact the providers they have identified and to access their records, and then (4) to successfully enroll the providers and the pa- tients in the survey. Although the concept of the episodes of illness as a unit of analysis is attractive and such data would prove to be a very valuable analytical database, especially for medical effectiveness research, the panel recog- nizes that experience with its application is limited and problematic, espe- cially as it applies to chronic illness episodes. Developing the capability to generate data on episodes of various types of illness raises important and complex methodological issues associated with the definition, classi- fication, and measurement that should be researched by NCHS in collabo- ration with the Agency for Health Care Policy and Research in a systemat- ic manner. The panel concludes that NCHS should establish a research agenda to examine the issues on the various aspects of the proposed design framework prior to making final decisions on the specific details of the design.

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EXECUTIVE SUMMARY 9 The panel outlines a phased multiyear strategy starting in 1992 for implementing its proposed data content, coverage, and design framework for a National Health Care Data System. Coordination and Resource Considerations In the course of the study the panel has noted several issues not directly addressed in its charge, some broadly related to the activities of NCtIS and others that go beyond to the structural issues of collaboration and coordina- tion of data gathering and analysis within the Department of Health and Human Services. The panel strongly believes that these broader issues must be addressed in the context of this report because the successful implemen- tation of an integrated and effective National Health Care Data System will, to a large extent, depend on their resolution. The panel believes that the concept and operations of the proposed National Health Care Data System should undergo external review by a panel of experts from outside the government. Furthermore, the panel has found that the internal analytical capabilities of NCHS, especially in its survey divisions, have been reduced in the past several years. This not only affects the timely analysis and interpretation of data collected, but also leads to the inability to anticipate important issues and to respond to them. The panel believes that, if not corrected, this deficiency will impair the ability of NCHS to implement the National Health Care Data System. The panel further notes the fragmented state of the federal health statis- tics activities and concludes that the Department of Health and Human Services needs to undertake a major review of the vast array of its data collection activities related to health care with the objective of developing a comprehensive and coordinated plan for establishing an efficient and cost- effective structure and organization for health care statistics. Finally, the panel emphasizes that without infusion of substantial new resources the course of action charted in this report cannot be accomplished, and the nation will continue to fall further behind in meeting its health care data needs. Health care data are of interest not only in terms of the general functions of NCHS, but more importantly in teas of specific use and inter- est in the establishment and evaluation of federal policy in health care. The panel considers the immediate implementation of its recommendations jus- tified in view of the importance of health care information to the Congress and the executive branch in the establishment and evaluation of federal health care policy, as well as to the states and society as a whole as they cope with the significant changes in the organization and delivery of health care. The panel recommends a considerably expanded data collection effort and a redesign strategy that will yield significantly more useful data than

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10 TOWARD A NATIONS HEALTH CARE SURVEY are currently available. An underfunded program cannot meet the needs of society effectively. In the final analysis, the commitment and institutional support of the secretary of the Department of Health and Human Services, the Office of Management and Budget, and the Congress are all essential to the successful implementation of a comprehensive integrated health care statistics strategy. RECOMMENDATIONS On the basis of its findings and conclusions the panel provides three categories of recommendations: (1) on the plan submitted by NCHS for review, (2) on the design framework for an integrated National Health Care Data System, and (3) on coordination, advice, and resource considerations. The text of the panel's recommendations, grouped according to these cate- gories, follows, keyed to the chapter in which they appear in the body of the report.

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EXECUTIVE SUMMARY RECOMMENDATIONS ON THE NCHS PLAN Recommendation 3-1: The panel endorses the NCHS plan to conduct the provider surveys on an annual basis. Recommendation 3-2: The panel recommends that NCHS extend its coverage of providers of health care to in- clude a fuller range of health providers than currently planned both physicians and nonphysicians, all of whom provide some form of health care. The panel further recommends that the universe for the hospital care com- ponent be extended to include long-term care hospitals and federal hospitals. Recommendation 3-3: The panel recommends that NCHS put in place a mechanism for developing criteria and for setting data collection priorities across the full range of health care providers and service settings, and that this mechanism and process be dynamic and include periodic review and revisions of both the criteria and coverage as necessary. Recommendation 3-4: The panel recommends that the National Health Care Survey include collection of per- son-based longitudinal information, expanding the data collected to include, but not be limited to, information on the health care received, costs and gross expendi- tures for health care, and outcomes. Recommendation 3-5: The panel endorses the NCHS decision to use the primary sampling units from the Na- tional Health Interview Survey for the National Health Care Survey, to retain their existing definition at this time, and to continue the needed research in this area.

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12 TOWARD A NATIONAL HEALTH CARE SURVEY RECOMMENDATIONS FOR A DESIGN FRAMEWORK FOR THE NATIONAL HEALTH CARE DATA SYSTEM Recommendation 4-1: The panel recommends that pro- viders other than those currently covered i.e., short- tenn hospitals, off~ce-based physicians, and nursing homes be surveyed using provider samples generated from the list of providers visited by respondents to the National Health Interview Survey as identified through the sur- vey screening. Recommendation 4-2: The panel recommends that NCHS examine the feasibility and utility of selecting its sam- ples of short-term hospitals and office-based physicians from inventories of each of these types of providers vis- ited by respondents to the National Health Interview Survey and identified through the survey screening. Recommendation 4-3: The panel recommends that NCHS develop and implement, as a component of the National Health Care Data System, a continuous, longitudinal survey of health care utilization and expenditures, and their health care providers, using cohorts of individuals selected from among National Health Interview Survey respondents. Recommendation 4-4: The panel recommends that NCHS develop and implement a survey capability to obtain lon- gitudinal data for cohorts of residents of nursing homes, while institutionalized, on their use of and expenditures for health care received from providers other than the nursing home itself. NCHS should explore the possibil- ity of obtaining this information for residents of other long-term institutions. Continued

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EXECUTIVE SUMMARY Recommendation 4-5: The panel recommends that NCHS undertake research in collaboration with the Agency for Health Care Policy and Research to examine the meth- odological issues of definitions and classifications and to determine the feasibility of using the National Health Interview Survey and the National Nursing Home Sur- vey to generate a sample of episodes of illness; the sam- ple should be followed longitudinally to collect data on the associated medical care use for the episode from both the sample of individuals and the health care pro- viders. Recommendation 4-6: The panel recommends that NCHS conduct research and develop procedures for data sys- tems that enable linkage of health care outcomes to health care received and health care costs. The panel further urges NCHS to examine the feasibility of collecting health insurance claims files from both private and public in- surers for individuals included in the samples from the National Health Interview Survey and the National Nursing Home Survey selected to study health care utilization and costs. Recommendation 4-7: The panel recommends that NCHS take into serious consideration the recommendations in this report relating to the National Health Care Data System before reaching final decisions on the 1995 re- design of the National Health Interview Survey. Recommendation 4-8: The panel recommends that NCHS establish a research agenda to determine the feasibility of its recommended course of action. If found feasible, the panel recommends that NCHS adopt the proposed design framework (with adjustments as warranted by the re- search) for a National Health Care Data System. 13

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4 TOWARD A NATIONAL HEALTH CARE SURVEY RECOMMENDATIONS RELATING TO COORDINATION AND RESOURCE CONSIDERATIONS Recommendation 5-1: The panel recommends that a continuing external oversight group of health care pro- fessionals be established to monitor and advise NCHS and the Department of Health and Human Services on the overall directions and scope and content of the Na- tional Health Care Data System, in the context of the agenda set forth by the panel in its proposed strategy for implementation. Recommendation 5-2: The panel recommends that an external technical committee of relevant experts be es- tablished during the planning and implementation phase to help plan and review the research needed to complete the proposed design; to identify the priorities for feasi- bility and research projects; and to monitor the progress made by NCHS in completing the research agenda and implementing the recommended design for a National Health Care Data System on schedule. Recommendation 5-3: The panel recommends that the Department of Health and Human Services establish an ad hoc external high-level committee, comprised of per- sons who have distinguished themselves in the field of health care statistics, survey and sampling methods, and the provision of health services, to undertake a compre- hensive review of He health care statistics activities through- out the department and report its findings directly to the secretary. Recommendation 5-4: The panel recommends that the Department of Health and Human Services ensure that sufficient resources for maintaining capability for anal- ysis and dissemination of the data collected be included in the resources allocated for the National Health Care Data System. Recommendation 5-5: The panel recommends that ad- equate funds for operating the National Health Care Data System, estimated to be no less than $25-30 million per year, be included in the appropriated budget of the Na- tional Center for Health Statistics.