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Coordination and Resource Considerations The panel's recommendations in the previous chapters are intended to provide a considerably enhanced body of knowledge about the health and well-being of the U.S. population, the health care received, the costs associ- ated with that care, and the relationships between the process and outcomes of care. In the course of its study the panel has noted several issues not directly addressed in its charge, some broadly relating to activities of the National Center for Health Statistics (NCHS), and still others that go beyond to the structural issues of collaboration and coordination of data gathering and analysis within the Department of Health and Human Services (DHHS) as a whole The panel strongly believes that these broader issues must be ad- dressed in the context of this report because the successful implementation of an integrated and effective National Health Care Data System will to a large extent depend on their resolution. ADVISORY STRUCTURE FOR THE NATIONAL HEALTH CARE DATA SYSTEM NCHS, by legislative mandate, is the lead health statistics agency in the federal government. By no means, however, does it have the sole responsi- bility for all health statistics. A general purpose statistical agency such as NCHS cannot be all things to all people in the sense of fulfilling every 83

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84 . TOWARD A NATIONAL HEALTH CARE SURVEY potential user's information needs. The accepted role of the agency is the provision of a time series of comprehensive, timely, and reliable informa- tion on the health status of the population and the health care system. In pursuit of producing consistent baseline information over time, it is all too easy for statistical organizations to fall into at least two traps: To produce information conducive to making statistical generaliza- tions but not sufficiently focused to provide detailed illumination of specific issues required to guide policy decisions and To produce information that is comparable over time but as a result has conceptual roots in issues or concerns of the past rather than those of the present. To many people interviewed by the panel, the current Health Care Sta- tistics program of NCHS has fallen into both of these traps to some ex- tent the current surveys generate primarily descriptive data about the sup- ply side of the health care system, and provide only data of a secondary nature to anyone wishing to analyze health care policy or clinical or epide- miological issues. The information collected is often not sufficiently com- prehensive. As noted previously, the current provider surveys focus on a unit of analysis- the event which by itself is of declining relevance. The panel argues that NCHS should continue to produce baseline infor- mation. NCHS also needs to redirect its resources and surveys within its statutory mandate to capture information relevant to current issues; provide a flexible capacity that will allow collection of more detailed or specific information on an ongoing basis. This issue is not unique to NCHS, as illustrated by W.G. Cochran in his discussion of the role of statistics in national health policy decisions in 1976: Any continuing general purpose survey may in time become outdated be- cause it is unresponsive to changing needs as perceived by users when new problems arise. Criticism is sometimes directed toward the survey statisti- cians, who are accused of concentrating on what they believe to be their expertise: planning for the collection of samples and making estimates from them, without either interest or competence in judging the utility of what is being collected. It has been 35 years since the passage of the National Health Survey Act (see Appendix D), yet the provisions of that law are as relevant today as they were in the 1950~ No far-reaching fundamental change in structure or the general organize anal framework of the surveys has been made in response to changing health information needs since the early years, when the concept, operational definitions, and consequent organizational struc- ture of the surveys were put in place. In fact, until the current efforts to develop a national health care survey, no new major survey had been devel-

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COORDINATION AND RESOURCE CONSIDERATIONS 85 aped within NCHS since the late 1970s. For various reasons, including resource constraints, the last major new surveys to be developed were the National Ambulatory Medical Care Survey and the National Medical Care Utilization and Expenditure Survey; the most recent successor of the latter, the National Medical Expenditure Survey, is not located in NClIS. Al- though much has changed since the 1970s in the health care system and in the sophistication of policy makers who demand and use these statistics, the surveys have not been able to keep pace with the changes and needs. The panel believes that the concept and operations of major systems such as the recommended National Health Care Data System should under- go external review periodically by experts from outside the government. The panel of course recognizes the inherent practical and operational dilem- ma of a strong built-in bias for maintaining the status quo. Still, it is important to periodically reconsider, modify, and change as necessary in order to stay current and relevant. A continuing, comprehensive, and integrated database is needed to ana- lyze the policy issues surrounding the health care system, one that would serve the Congress, administrators, and other decision makers in the rele- vant federal agencies and the health care research community as well. The panel firmly believes that a redesigned National Health Care Data System as recommended in the previous chapter is an essential ingredient for signifi- cantly increasing the value of national health care data. Although the pro- posed design may be regarded by some as a substantial departure, with a gradual and small-scale approach more appropriate, in the panel's judgment exactly such an initiative is required to halt the drift toward becoming margin- al and the inevitable further erosion of the NCHS health care statistics budget. The panel therefore has recommended that NCHS begin now to imple- ment its recommendations for a comprehensive integrated National Health Care Data System and to plan a steady incremental development throughout the remainder of the l990s. Detailed specifications on the scope and con- tent of an integrated National Health Care Data System that is responsive to the changing inflation needs will require concerted planning efforts, re- sources, and expert guidance and oversight. Recommendation 5-1: The panel recommends that a continu- ing external oversight group of health care professionals be es- tablished to monitor and advise NCHS and the Department of Health and Human Services on the overall directions and scope and content of the National Health Care Data System, in the context of the agenda set forth by the panel in its proposed strategy for implementation. The panel has provided a design framework for implementation by NCHS; it has also recommended that further research be undertaken on feasibility and methodological issues in order to reach informed decisions on implement- .

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86 TOWARD A NATIONAL HEALTH CARE SURVEY ing the deta`'.c of the design. In the panel's opinion, NCHS would benefit from technics guidance provided by an external group of technical experts. Recommendation 5-2: The panel recommends that an external technical committee of relevant experts be established during the planning and implementation phase to help plan and review the research needed to complete the proposed design; to identi- fy the priorities for feasibility and research projects; and to monitor the progress made by NCHS in completing the research agenda and implementing the recommended design for a Na- tional Health Care Data System on schedule. The technical committee could be part of the functions of the recom- mended oversight group for the National Health Care Data System or a separate working group functioning independently. The working group es- tablished under the auspices of the Section on Survey Research Methods of the American Statistical Association, which currently advises the Bureau of the Census on the Survey of Income and Program Participation, has been an effective vehicle for the Bureau; it could serve as a model for consideration by NCH~ in carrying out the above recommendation. IMPROVING DEPARTMENTAL COORDINATION The panel has been impressed by the information-gathering capabilities that have been developed in other DHHS agencies, largely in response to their needs for data on which to base program decisions (see Appendix C). The panel is concerned, however, at the extent of fragmentation and what appears to be uncoordinated and at times overlapping development of health statistical activities in the department. It is not this panel's responsibility to say that these activities in the other agencies should or should not continue to exist, or to pass judgment on how all those activities relate or will relate to the proposed National Health Care Data System. It is the responsibility of the department, however, to ensure that statistical information needed for policy formulation is gathered, analyzed, and made available in a timely and cost-effective manner consistent with the -mission and mandates of the department and its components without unnecessary duplicating and over- lapping activities. Section 304 (c)~1) of the Public Health Service Act, requires the secretary to coordinate the health statistics activities undertak- en and supported through the units of the Department of Health and Human Services. The panel concludes that the department needs to undertake, with expert consultations as needed, 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.

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COORDINATION AND RESOURCE CONSIDERATIONS 87 Considering the current fragmented state of the federal health statistics activities, unless such a review is conducted and the findings implemented, various agencies increasingly will fund special expensive one-time or peri- odic surveys to meet their specific needs, when in fact, well-designed and properly focused initiatives, conducted routinely, would meet many of those needs in a cost-effective manner. For example, better coordination and integration are needed than now exist between the kinds of data NCHS has traditionally collected, the administrative data that now are collected by Medicare and soon Medicaid, and the state-based data systems. The federal government needs current, relevant, and reliable data on the entire popula- tion in order to carry out its responsibilities conscientiously. It is especially important that ongoing dialogue and collaboration exist between the agen- cies, especially NCHS, the Agency for Health Care Policy and Research, the Health Care Financing Administration, and the Alcohol, Drug Abuse, and Mental Health Administration. Similar concerns have been expressed by others about the need for improved data on health care policy and the consequent need for coordinating and steering groups to detains priori- ties for development of data collection systems (see Citro and Hanushek, 1991, for a discussion on this subject). Recommendation 5-3: The panel recommends that the Depart- ment of Health and Human Services establish an ad hoc exter- nal high-level committee, comprised of persons who have distin- guished themselves in the field of health statistics, survey and sampling methods, and the provision of health services, to un- dertake a comprehensive review of the health statistics activi- ties throughout the department and report its findings directly to the secretary. Such a committee should have a budget and qualified staff support that is independent of all the agencies involved and well respected by all parties of interest. One possibility is to carry out this effort in collaboration with the National Committee on Vital and Health Statistics (NCVHS), which is the principal statutorily established advisory body to the secretary on health statistics matters. However, because of its size and the selection of its membership to be broadly concerned with health and vital statistics, it is not constituted to have the range of skills and technical expertise needed to undertake effectively the kind of task envisioned by the panel and other such activities. Furthermore, to undertake such a task, it would be essential to have additional ad hoc expert consultation when needed, a highly quali- fied independent staff, and an adequate operating budget. It is also essen- tial, in carrying out such tasks, that the committee should report directly to the secretary as called for in the statute. Even assuming that the department takes on this very comprehensive

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88 TOWARD A NATIONAL HEALTH CARE SURVEY review, as stated earlier, major data systems still should be reviewed peri- odically. The panel believes that there should be some means of periodic review for the department to assess the capability and effectiveness of the statistical activities, looking at such matters as survey content, resources, and organization in the context of the nation's needs for health care infor- mation. One possible locus of such external accountability could be the NCViIS if strengthened along the lines indicated above. In order for data collected by all agencies to be most useful, core data sets and concepts need to be comparable. NCHS should work in collabora- tion with the program agencies and the policy staff offices in the depart- ment in developing and encouraging the use of standard definitions and classifications arid act in other ways to enhance the usefulness of the infor- mation and to reduce costs and unnecessary duplication of effort. As indicated earlier, increased coordination and collaboration between the agencies in the collection, linkage, and analysis of health care data are essential. Medicare administrative data files increasingly have the capabili- ty of providing comprehensive information for the population age 65 and older. Special studies are being developed on the Medicare beneficiaries, Medicaid-eligible nursing homes, and other areas of interest and concern to the Health Care Financing Administration. Examples of such major initia- tives are the Medicare Current Beneficiaries Survey, the Nursing Home Resident Assessment data set, and the Medicare health status registry. The panel recognizes, however, that data from administrative files are not neces- sarily substitutes for data from statistical surveys, and the two types of data are not always additive. ENHANCING THE CENTER'S ANALYTIC CAPABILITY Establishing and maintaining high-quality and relevant data systems for appropriate, timely dissemination requires a capable analytic staff of inter- nal users. The panel finds that, although NCHS has maintained its empha- sis on and capacity to ensure the validity and reliability of the data collect- ed, there has been a loss of analytic capability, particularly within the survey divisions of NCHS for various reasons, but primarily as a result of budget- ary constraints. At the very time that major health policy issues are being increasingly debated and policy and program managers and researchers in government and in the private sector are seeking better information for their purposes, the data appear to be becoming less pertinent to their needs. As a result, the users are turning to the stewards of administrative data such as the Health Care Financing Administration and the newly created Agency for Health Care Policy and Research for primary national data collection for which NCHS has the mandate and should have the capacity to provide. In times of budget limitations, data analyses are often sacrificed to

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COORDINATION AND RESOURCE CONSIDERATIONS 89 protect the basic data collection activities in a statistical agency. That is what appears to have happened in the survey divisions of NCHS over the past several lean budget years. The panel recognizes that NCHS does have a very strong but very lean separate Office of Analysis; however, the small staff of that office cannot, and should not, undertake all the analysis of the data from all the surveys. Strong analytic capability in the divisions that develop and conduct the surveys is important for keeping the content of the surveys relevant. The current impoverished analytical capability of these divisions not only affects the timely analysis and interpretation of data collected, but also leads to inability to anticipate important issues and to respond to them. The panel believes that, if not corrected, this will impair the ability of NCHS to implement the National Health Care Data System. Recommendation 5-4: The panel recommends that the depart- ment ensure that sufficient resources for maintaining capability for analysis and dissemination of the data collected be included in the resources allocated for implementation of the National Health Care Data System. RESOURCE REQUIREMENTS Moving from event-based statistics to comprehensive person-based sta- tistics, which the panel believes is absolutely essential for the provision of adequate health care data, cannot be accomplished without a substantial infusion of new resources. The panel feels that it would be remiss if it did not emphasize the importance of this additional funding and attempt to provide at least a crude estimate of what would be necessary to produce the recommended data on a continuing basis. The lack of funding and staffing over the past several years at NCHS at a level adequate to even maintain the traditional survey infrastructure, let alone expand into new areas, methods and analysis, is extremely troubling to the panel. Inadequate funding has been translated into reduction in the frequency and sample sizes of surveys and, although harder to document directly, probably a decline in the quality and analytic utility of the surveys. Health care data are of interest not only in terms of the broad functions of society, but also more importantly in terms of specific use and interest in the establishment and evaluation of federal policy in health care. The panel considers that the immediate implementation of its recommendations is jus- tified in view of the increased importance of health care issues to Congress and the executive branch in the establishment and evaluation of federal health care policy, and to the states and the society as a whole as they cope with the significant changes in the organization and delivery of health care. The National Health Care Data System as recommended by the panel

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go TOWARD A NATIONAL HEALTH CARE SURVEY must be funded adequately from the start if it is to be successfully designed, implemented, and operated. The panel recommends a considerably expand- ed data collection effort and a redesign strategy that will yield significantly more useful data than are currently available. An underfunded program cannot discharge its responsibilities 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 departmen- tal comprehensive integrated health care statistics strategy. The panel has proposed a strategy with a number of decision nodes in the future based on the results of the research agenda. Costs for implement- ing the coordinated data system proposed by the panel will depend on the decisions reached at the end of each stage. Implementation of the proposed design will take time arid many of the specific details will emerge over the period. The panel therefore does not believe it is possible to provide pre- cise estimates of funds needed to implement the proposed data system. However, on the basis of past and current expenditures for comparable national surveys conducted in the department, one can estimate the relative magnitude of funds that will be needed for data collection when the Nation- al Health Care Data System is operational. Based on projected costs for fiscal 1992 and 1993, the annual cost of data collection for the provider surveys included in the current NCHS plan (excluding the patient follow-up component), is about $9-10 million.) This amount does not include any data processing, personnel, or overhead costs for these surveys. Comparable annual costs for the National Health Inter- view Survey are about $12 million. The National Medical Expenditure Survey contract costs for data collection were over $66 million for 1987- 1989 (in 1987 dollars). This total includes $32 million for the household survey component, $11 million for the institutional population survey, $7.5 million for the medical provider survey, $9 million for the health insurance survey, $7 million for the survey of American Indians, and $.4 million for the medical record survey component. The panel estimates that, in 1991 dollars, these data collection contract costs would be in the range of $74-77 million, even with a modest rate of inflation of 3-4 percent per year. The National Health Care Data System when fully implemented will include not only a largely expanded information base on providers and visits linked at the person level to the National Health Interview Survey, but also longitudinal components of the household and institutional populations linked to the National Health Interview Survey and the National Nursing iThe surveys included are the National Hospital Discharge Survey, the National Ambulatory Care Survey, the National Home Health and Hospice Care Survey, the National Health Provid- er Inventory (which will be conducted every three years; the last one was conducted in 1991), and the National Nursing Home and Board and Care Home Survey.

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COORDINATION AND RESOURCE CONSIDERATIONS 91 Home Survey, respectively, to obtain current information on patterns of health care utilization, costs, and expenditures- but in a more cost-efficient manner. On the basis of past and current experience with conducting simi- lar surveys and taking into consideration potential cost savings resulting from its recommendations, the panel estimate that the annual data collection costs for the proposed integrated National Health Care Data System could be expected to be no less than $25-30 million (in 1991 dollars). This figure includes the $9-10 million currently estimated for the conduct of the pro- vider surveys. Recommendation 5-5: The panel recommends that adequate funds for operating the National Health Care Data System, esti- mated to be no less than $25-30 million per year, be included in the appropriated budget of the National Center for Health Sta- tistics. In conclusion, the panel believes that the blueprint for action that it recommends will contribute toward a significantly improved and efficient data collection system that will go far toward meeting the data needs for monitoring and evaluating the quality, access to, effectiveness and out- comes, and costs and expenditures for health care in the United States into the next century. The blueprint is worthy of full fiscal support, even in these difficult financial times, from the Congress and the executive branch.

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