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Introduction

For decades, our nation has collected statistics that provide information on the health status and health care utilization of our population. This information is gathered from a variety of sources: national surveys, administrative records, vital statistics, and state- and local-level data sources. Several public agencies are responsible for the collection, compilation, analyses, and reporting of these statistics. The statistics are used by numerous different people and groups—policy makers in Congress and state legislatures, public health and health care researchers, health care providers, employers, insurers and other private sector stakeholders, consumers, and many others in the health community—for many different reasons. The data, the data collection methods, the data providers, and the data users are the components that combine to form what is considered to be our national health statistics system.

Recently, many new developments have brought to the forefront questions about the adequacy of our present health statistics system. For example, the growth of managed care, new information technologies, and changes in welfare policy will open up opportunities in administrative data; advances in genetics could develop new major health status data items and raise issues of privacy and confidentiality; the growing emphasis on state and local roles in health care creates a demand for greater geographic detail in data; efforts to develop and assess health promotion and disease prevention efforts will require population-based data; the aging of the population will draw greater attention to measures of functional status and disability;



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Toward a Health Statistics System for the 21st Century: Summary of a Workshop 1 Introduction For decades, our nation has collected statistics that provide information on the health status and health care utilization of our population. This information is gathered from a variety of sources: national surveys, administrative records, vital statistics, and state- and local-level data sources. Several public agencies are responsible for the collection, compilation, analyses, and reporting of these statistics. The statistics are used by numerous different people and groups—policy makers in Congress and state legislatures, public health and health care researchers, health care providers, employers, insurers and other private sector stakeholders, consumers, and many others in the health community—for many different reasons. The data, the data collection methods, the data providers, and the data users are the components that combine to form what is considered to be our national health statistics system. Recently, many new developments have brought to the forefront questions about the adequacy of our present health statistics system. For example, the growth of managed care, new information technologies, and changes in welfare policy will open up opportunities in administrative data; advances in genetics could develop new major health status data items and raise issues of privacy and confidentiality; the growing emphasis on state and local roles in health care creates a demand for greater geographic detail in data; efforts to develop and assess health promotion and disease prevention efforts will require population-based data; the aging of the population will draw greater attention to measures of functional status and disability;

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop and the boom in information technology will provide new opportunities for collecting and disseminating data. These and other imminent developments in medicine, health care, and public health are likely to influence interest in and need for health statistics as well as the ability of the health statistics system to produce useful information products in a timely fashion. The obvious question arises: What steps need to be taken to ensure that our nation’s health statistics system will continue to meet the demands for health data in the twenty-first century? It is this question that the U.S. Department of Health and Human Services (DHHS) posed to itself and its agencies, many of which devote resources to health statistics and are the source for the majority of our national health data. The National Center for Health Statistics (NCHS), part of the Centers for Disease Control and Prevention (CDC), is the principal vital and health statistics agency of the federal government. NCHS provides data on vital events as well as information on health status, lifestyle and exposure to unhealthy influences, the onset and diagnosis of illness and disability, and the use of health care. The Agency for Healthcare Research and Quality (AHRQ) supports research designed to improve the quality of health care, to reduce its cost, to improve patient safety, to address medical errors, and to broaden access to essential services. AHRQ sponsors and conducts research that provides evidence-based information on health care outcomes; quality; and cost, use, and access. The Substance Abuse and Mental Health Services Administration (SAMHSA) works to improve the quality and availability of substance abuse prevention, addiction treatment, and mental health services. SAMHSA provides national data on such health issues as drug abuse and drug treatment effectiveness. The National Institutes of Health (NIH) conducts extensive biomedical research and provides data on diseases and treatments. The Health Care Finance Agency (HCFA) administers Medicare, Medicaid, and the State Children’s Health Insurance Program (SCHIP); and performs a number of quality-focused activities, such as regulation of laboratory testing and certification of nursing homes and other continuing care providers. HCFA provides state and national data on national health care indicators and expenditures, such as health care spending; employment and prices; and Medicare, Medicaid, and SCHIP enrollment. The Health Resources Services Administration (HRSA) directs national health programs that improve the nation’s health by assuring equitable access to comprehensive, quality health care. HRSA provides data on minority health issues. The CDC is responsible for protecting the health of the American public through the monitoring of dis-

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop ease trends, investigation of outbreaks, assessment of health and injury risks, and implementation of illness and injury control and prevention interventions. When assessing the status of our nations health statistics system, if changes or improvements need to be made, all the agencies that are responsible for the collection of health data must be involved in order to implement the changes effectively. To help identify steps toward developing a new, more robust, relevant, timely, and secure health statistics system, DHHS adopted plans to develop a “21st century vision for health statistics.” The vision process began in 1999 as a partnership between the National Committee on Vital and Health Statistics (NCVHS),1 the National Center for Health Statistics (NCHS), and the DHHS Data Council.2 Steps in the process involve a systematic effort to obtain input from experts from various related fields, state and local officials, data users, and other interested parties, beginning with a dialog on future health and health care trends, information and communications technology, and public policies. By its end, this process will identify forces that will shape health information needs and opportunities for the future, and will formulate a vision for the future that will help guide policy and planning for health statistics programs. As part of this initiative, and at the request of NCHS, the Committee on National Statistics (CNSTAT) convened a workshop on November 4–5, 1999, to identify new directions for health statistics and the implications for health data of changes in the health arena faced by DHHS; state and local health departments; the consumers, developers, and providers of health care products and services; and other health policy makers. Changes in our understanding of health, in health care (managed care, Medicaid, Medicare), in welfare reform, in federal-state relations, in the availability of 1   NCVHS serves as the statutory public advisory body to the Secretary of Health and Human Services in the area of health data and statistics. In that capacity, NCVHS provides advice and assistance to DHHS and serves as a forum for interaction with interested private sector groups on a variety of key health data issues. 2   The DHHS Data Council coordinates all health and non-health data collection and analysis activities of DHHS, including an integrated health data collection strategy, coordination of health data standards, and health information and privacy policy activities. The Data Council consists of assistant secretary and agency administrator level DHHS officials who have a direct reporting relationship to the Secretary, the HHS Privacy Advocate, and the Secretary’s Senior Advisor on Health Statistics. The Data Council serves as the DHHS liaison for the NCVHS.

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop administrative data, in advanced genetic data, in information technology, in confidentiality issues, and in data integration are examples of recent developments that may play a significant role for DHHS in making future policy decisions. Funding for the workshop was provided by the Office of the Assistant Secretary for Planning and Evaluation, DHHS. The goals of the workshop were to: provide an overview and historical perspective on the elements of the nations health statistics system; identify key assumptions and critical components of a health information system, in part by using examples of health statistics systems in other countries as models; review the quantity, quality, and availability of the data currently provided the health statistics system; identify current and future data gaps, particularly with respect to the health and policy questions the future health statistics system should be able to answer; and discuss ways in which the current health data system must evolve to meet future information needs. Before the health statistics system as a whole can be examined, particularly with respect to the goals of the workshop, the question of “what is health statistics” should be addressed. The term “health statistics” connotes different things to different people, from public health surveillance to vital records, and the definition and scope may change depending on the research or policy question that those statistics are being used to answer. Although the scope of this workshop did not directly encompass establishing a standard definition of health statistics, the presentations and discussions did fall into categories that are within the boundaries of what is commonly considered health statistics. The categories that emerged during the workshop discussions included: Health status: prevalence and burden of disease and epidemiological concerns Health services: service delivery, treatments, quality of care Health care financing: costs, access, insurance Outcomes of care and efficacy (using observational data) The above list is in no way intended to be comprehensive or exclusionary,

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop but more to set the context in which the term “health statistics” is used throughout the workshop discussions summarized in this report. Participants at the workshop were diverse in background and perspective, representing both data providers and data users. There were representatives from the federal, state, and local agencies, as well as from the private sector, the research community, and academe. To offer examples as models of health statistics systems from other countries, there were several international health experts in attendance. To ensure that all the issues concerning health statistics were addressed, participants represented expertise in such areas as health policy; managed care; outcome measurement; children’s health needs; population-based assessments of health status; surveillance of illness; assessing well-being; risk assessment; determinants of health (e.g., genetics, behavior, socioeconomic status, environment); organization, delivery, and financing of health services; health economics; technology, data policy, privacy, and confidentiality; and survey methods. The meeting began with a keynote presentation and four invited background papers and concluded with four panel discussions. Following each session, time was reserved for discussion among all workshop participants. The keynote address, commissioned by CNSTAT and entitled “Health Statistics: Past, Present, and Future,” is reproduced in its entirety as Chapter 2 of this report. The four background papers were commissioned separately by the NCVHS (see Appendix). The list of workshop participants and the agenda for the workshop are also provided in the Appendix. Participants were asked to present their ideas of how changes in the health arena are affecting their needs for information. Representatives of the research and academic communities were asked to review and discuss scholarly work in relevant areas. Participants were asked to enumerate important changes in the health arena, to comment on their anticipated or observed impact on data needs and collection methods, and to suggest how DHHS could best contribute to meeting the nation’s health data needs. Presentations by participants provided a base for the workshop’s broader discussions of future directions for health statistics and the health statistics system. All participants were given the following questions to help guide the discussions: Who have been the health information users, and how have their information needs changed in the past 25 years? Who have been the information suppliers, and how have the skills

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop they need and the technology they use to produce and disseminate information changed during the past 25 years? How are the data user and data provider communities, and their information needs, likely to change in the next 25 years? What specific modifications must be made in the current health statistics system to adequately deal with these changes? The overall goal of the workshop was to identify and briefly discuss as many pertinent and relative issues facing a new health statistics system as possible. Although this report is intended to thoroughly summarize the issues raised by participants during the presentations and discussions at the workshop, it is not intended to serve as a comprehensive reference on all of the issues involved in health statistics. The workshop agenda was designed to allow issues to be raised through formal presentations as well as in general discussion, during which all workshop participants could ask questions or raise issues of particular importance to them. However, due to time limitations and the flow of the discussion, it is important to note that some issues are covered in more detail than others, and some other issues in this area may not have been discussed at all. In particular, it is acknowledged that the discussions provide somewhat uneven coverage in identifying the focal issues and major developments in the health arenas of interest to DHHS. Although many are mentioned, only a few are fully articulated or explained. Also not discussed in detail are all of the potential ways in which the current data system must evolve to meet future information needs, particularly with respect to issues of overlap, integration, data sharing, and privacy and confidentiality issues. There is also little discussion of feasible alternatives and approaches to these issues. Furthermore, the report does not fully address how the current system evolved into a set of independent and inefficient “silos” spanning a very large number of federal agencies, and the bureaucratic and turf issues and constraints that make it very difficult to overcome problems. Despite the limited discussion or omission of these and other issues, it is hoped that this summary does offer the reader the true spirit of the discussions and debates among the participants at the workshop and that the ideas and issues raised in the discussions will be taken into consideration as plans for developing a new health statistics system unfold. No attempt was made to establish a consensus among participants at the workshop, and the ideas presented do not necessarily represent those of any group, including CNSTAT and the National Academies.