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1 Introduction Health care in the United States has become an extremely complex and expensive activity. Over the past several years, several important changes have been taking place in its delivery and financing; more changes are expected in the future in a continuing effort to meet the health care needs of the population at affordable costs. Clearly we need, now more than ever before, relevant and timely data to guide policy makers in making informed decisions regarding the health status of our nation and the effectiveness and efficiency of its health care delivery system. Unfortunately, for a variety of reasons, existing sources are unable to address fully a number of areas of health policy interest and are capable of providing only part of the informa- tion needed to evaluate changes in the organization, financing, and delivery of health care. Current surveys are inadequate, for example, in their cover- age of emerging sites of medical care, in measuring the impact of change on the quality, effectiveness, and outcome of medical care; in tracking persons across health care settings; and in addressing the health care needs of the poor, minorities, and those without adequate health insurance. Data are needed to measure the degree of shift from traditional to alter- native health care settings and to provide national estimates for types of care delivered in these new settings, in order to continue to provide basic information on the supply and use of health services and health care tech- nology. Data obtained from existing surveys are becoming less definitive as patients and treatments shift to other settings. 15

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16 TOWARD A NATIONAL HEALTH CARE SURVEY There is need also to assess the impact of changes, such as the introduc- tion of new technologies in the practice of medicine, and to assess the change in the health outcomes that are brought about by modifications in financing and organization of such care. Data are needed on the differences in health outcomes between different geographic locations of surgery or other care In terms of subsequent institutionalization, mortality, or illness; differences in outcome from alternative treatments or technologies employed for the same diagnosis; and the impact of declining inpatient lengths of stay, for various diagnoses, on subsequent readmission, other care, and health outcomes. To be responsive to those needs and to others in the future, the statistical design for our data systems must have the flexibility, which they do not now have, to adapt to changes in the health care system as they occur. Recognizing that our national data systems have been unable to keep pace with the changes occurring in the health care system in the past de- cade, the National Center for Health Statistics (NCHS), in the U.S. Depart- ment of Health and Human Services (DHHS), has developed plans for revi- sion, expansion, and coordination of their data collection activities on health care utilization that currently are carried out in separate, independently de- signed, national provider-based surveys. They have named this group of data collection activities the National Health Care Survey. PANEL'S CHARGE AND ITS APPROACH To obtain guidance in the development of national health care data for the 1990s and the decades to come, the director of NCHS requested that the National Research Council through its Committee on National Statistics and the Board on Health Care Services of the Institute of Medicine convene a panel of experts to evaluate its plan for the National Health Care Survey. The Panel on the National Health Care Survey held its first meeting in February 1990. In order to evaluate the proposed plan for a National Health Care Sur- vey, the panel was asked to carry out two major tasks: (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 survey such as sample design, sample size, data collection methods, and data sets. Throughout this report, use of the term provider includes both the individual health care provider and the facility or service setting where health service is provided.

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INTRODUCTION ~7 1 In formulating its recommendations, the panel found it necessary to consider more than just the four provider surveys currently included in the center's plans for the National Health Care Survey (the center's formal plan is reproduced in Appendix A). The panel's consideration therefore includ- ed the other data systems of the center, such as the National Health Inter- view Survey, within the umbrella of the integrated design framework, as well as issues of a more general and broad nature than those outlined above. The panel also considered it important to address some of the basic issues concerning the internal capacity of the NCHS, the need for increased col- laboration and integration of data systems among the DHUS agencies, and the efficient and coordinated use of resources in the development and anal- ysis of health care statistics within DHHS. To address its charge in a systematic manner, the panel decided early in its deliberations to obtain the views of a wide group of users, policy mak- ers, and other interested parties. As a first step in this direction, an infor- mal survey of users was conducted. Focused group interviews were con- ducted of selected federal health officials, legislative staff, researchers, and state vital and health statisticians. The interviews followed a protocol de- veloped to ensure that all issues were discussed during the interviews. De- tailed notes of the interviews were prepared for the panel's review and discussion. Views of more than 70 people representing a wide variety of organizations were obtained in this manner. The findings of the survey of users and the interview guide used for the group meetings are summarized in Chapter 2 and appear in full in Appendix B. The panel also obtained the views of users through oral presentations at its meetings; representatives of the various federal agencies that have an interest in health care data and others were invited to express their needs for data and to comment on their use of the existing data systems. The panel reviewed an extensive body of material: planning docu- ments; internal memoranda; relevant internal documents related to design, redesign plans, and other material provided by NCHS and other department officials during the course of the study; as well as historical documents and publications relating to the surveys under consideration. Literature on the changes in the health care system in the United States also was reviewed. In response to its charge, the panel developed a set of recommendations for the content, coverage, and design for a data system for this decade and into the next century. Some aspects of the panel's proposals are similar to those contained in the center's current plans, with some modifications and expansion. Other proposals, however, reflect important conceptual and op- erational recommendations that go beyond the current plans and are intend- ed to enhance the capability of the data system to serve the nation's needs for statistical information about its health care system. Although the modi- fications to the plan that are proposed cannot be accomplished immediately,

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18 TOWARD A NATIONAL HEALTH CARE SURVEY the panel believes that the center should begin the phased implementation of these recommendations without delay. The panel's proposals are intend- ed to provide a comprehensive, integrated, yet realistic package that should be phased in as a whole. ORGANIZATION OF TTIE REPORT The report is organized in a manner responsive to the charge. Chapter 2 is a discussion of the changing health care delivery system in the United States and the implications for needs for comprehensive and current data to monitor the changes, evaluate their effectiveness and guide development of health policy. Chapter 3 presents the panel's review and critique of the center's plan for an integrated National Health Care Survey in its present stage of devel- opment and the panel's recommendations for modifications and expansion in the areas of coverage and content of the survey, the benefits and limita- tions of the center's design, and identification of areas that need further investigation. Chapter 4 lays out the panel's recommended approach toward an inte- grated National Health Care Data System and presents the panel's strategy for implementation by the year 2000. This chapter states the panel's con- clusions about the current plan, presents recommendations about new direc- tions, and suggests steps and a timetable by which such a survey design might be put in place. Finally, Chapter 5 highlights some basic issues of capacity, coordina- tion, and resource considerations about the health care activities of DHHS. Although the principal intent of this report is to address the specific concerns of NCHS regarding the optimal approach for gathering needed data about the health care system, the panel is hopeful that the report will provide guidance to a wider audience responsible for federal health care policy, and in general contribute toward development of an efficient and cost-effective data base for monitoring the quality, access to, and costs of health care in the United States.