Summary

OVERVIEW

In the future, how will older Americans and their families make decisions about important health care choices? Early in 1996, the Greenwall Foundation asked the Institute of Medicine (IOM) to propose an agenda for health outcomes research focused on older people to provide the information to make those decisions. This report contains the response to that request as devised by a 17-member IOM committee. It considers what the future is likely to bring for America’s older population, its health care system, and the field of health outcomes research; and it presents the committee’s recommendations for research to be undertaken over the next 10 years. As used in this report, health outcomes research is research that studies the end results of the structure and processes of health care on the health and well-being of patients and populations.

Older individuals and their families enter the health care system with their own unique set of problems, conditions, and values. Like younger people, however, they vary in their circumstances and their preferences for different outcomes; these variations need to be considered both in providing health care and in evaluating its effects on the health and well-being of older people. A basic challenge of health outcomes research is discovering how to draw general conclusions about health care and health outcomes that are still sensitive to differences in what people need and desire from the health care system. If the recommendations contained in this agenda are realized, the field of health outcomes research will be better prepared with the measurement tools and information needed to meet that challenge and to identify positive and negative conse-



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Health Outcomes for Older People: Questions for the Coming Decade Summary OVERVIEW In the future, how will older Americans and their families make decisions about important health care choices? Early in 1996, the Greenwall Foundation asked the Institute of Medicine (IOM) to propose an agenda for health outcomes research focused on older people to provide the information to make those decisions. This report contains the response to that request as devised by a 17-member IOM committee. It considers what the future is likely to bring for America’s older population, its health care system, and the field of health outcomes research; and it presents the committee’s recommendations for research to be undertaken over the next 10 years. As used in this report, health outcomes research is research that studies the end results of the structure and processes of health care on the health and well-being of patients and populations. Older individuals and their families enter the health care system with their own unique set of problems, conditions, and values. Like younger people, however, they vary in their circumstances and their preferences for different outcomes; these variations need to be considered both in providing health care and in evaluating its effects on the health and well-being of older people. A basic challenge of health outcomes research is discovering how to draw general conclusions about health care and health outcomes that are still sensitive to differences in what people need and desire from the health care system. If the recommendations contained in this agenda are realized, the field of health outcomes research will be better prepared with the measurement tools and information needed to meet that challenge and to identify positive and negative conse-

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Health Outcomes for Older People: Questions for the Coming Decade quences of the major changes now under way in health care delivery and financing in the United States. The committee identified two types of outcomes measures for special research attention over the next 10 years. They are: (1) health-related quality of life, including functional health status, 72) satisfaction with care. For most older individuals, health-related quality of life—with its focus on an individual’s perceptions and judgments about his or her life—is perhaps the most important outcome to consider. Central to all research examining health outcomes are reliable, valid, and practical measurement tools. The committee recommends the development of a “toolbox” of well-defined and validated measurement instruments that have been specifically tested for use with older individuals in different care settings, including nursing homes. In one of its most significant recommendations, the committee calls for the development of a core set of outcomes indicators for practitioners, health care plans, and organizations to use in monitoring health outcomes for the older individuals and populations they serve. It also recommends further research on how outcomes data can be made more clinically relevant and useful in correcting deficiencies in processes or systems of care. Development of such a core set of indicators will involve investigation of practice variations, patient and consumer involvement in care decisionmaking, and strategies for disseminating outcomes information and changing practice patterns. It will also require attention to the impact of changes in the current systems of financing, service delivery, and quality assessment and improvement. The committee recommended that research focus in particular on changes in health outcomes that may occur as older individuals make transitions, such as when they move between types of care (e.g., from active treatment to palliative care), treatment settings, and health plans. In order to improve the scope and quality of health outcomes research, several basic infrastructure issues also need to be addressed. In particular, tackling the research questions posed in this report calls for a well-trained research workforce, continued work to improve research strategies and measurement tools, and efforts to preserve and improve the integrity of research and the quality of outcomes data. The complete list of the committee’s recommendations follows.

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Health Outcomes for Older People: Questions for the Coming Decade RECOMMENDATIONS: RESEARCH ISSUES Health-Related Quality of Life Health-related quality of life should be a major focus of health outcomes research for older individuals. The research should continue to examine how to define and measure those dimensions of health-related quality of life that are particularly important to older individuals. In particular, more and better global and targeted functional measures should be developed for older individuals to describe and assess functional outcomes (a) in general, (b) for distinct clinical conditions, and (c) within specific settings. Satisfaction with Care Improvements should be made in the way older individuals’ satisfaction with care is measured and interpreted. “Toolbox” of Outcomes Measures and a Core Set of Outcomes Measures A well-defined set or “toolbox” of outcomes measures for older individuals should be developed and further refined. The toolbox should allow easy and appropriate application of these measurement tools by nonresearchers in a variety of settings. A core set of outcomes measures should be developed for use by practitioners, health care plans, and organizations serving older individuals and populations. Methods of making outcomes data more useful clinically should be developed. Practice Patterns and Interventions and Their Effect on Outcomes Continued research should examine how different practice patterns and treatment interventions affect older individuals’ health outcomes. Specific examples of practice patterns and interventions to study include advance care planning; clinical practice guidelines, pathways, and other strategies; and interdisciplinary intervention teams. An examination of the cost-effectiveness of these practices should be included. Involvement in Care Decisionmaking Methods of enhancing older individuals’ and their families’ involvement in decisionmaking about their care and its relationship to health outcomes should be tested.

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Health Outcomes for Older People: Questions for the Coming Decade Education and Dissemination of Outcomes Information The effectiveness and impact on health outcomes of providing health care information to older individuals and health care professionals should be evaluated. New and improved ways of disseminating outcomes information should be tested. Financing Systems Research, including randomized controlled trials and quasi-experiments, should continue to examine how various provider payment methods and programs affect the health outcomes of older individuals and populations. Outcomes of special concern are access to care, health care costs, quality of care, health-related quality of life, functional health status, and satisfaction with care. Service Delivery and Utilization As alternative forms of organizing and delivering health care for older individuals are encouraged and continue to be developed, the effect on health outcomes should receive continuing and rigorous evaluation. Transitions The impact on health outcomes when older individuals make transitions between types of care (e.g., from active treatment to palliative care), treatment settings, and health plans should be explored. Quality Assessment and Improvement The performance of the government regulatory agencies, private-sector accreditation organizations, and organizations’ internal programs in using outcomes-based quality assessment and improvement systems should be evaluated for effectiveness in improving health outcomes for older populations. RECOMMENDATIONS: RESEARCH INFRASTRUCTURE NEEDS Workforce Issues Government agencies and private foundations should support training and education opportunities in health outcomes research.

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Health Outcomes for Older People: Questions for the Coming Decade Conduct of Research Principles for the appropriate conduct of health outcomes research and the use and dissemination of outcomes data need to be developed and implemented. Data Quality Research on the quality of data used in health outcomes research should be supported. Data Management Systems An independent appraisal of systems for data management that support outcomes research should be conducted. This includes evaluations of specific tools and applications, informatics, databases, and basic telecommunications infrastructure. Methodological and Analytic Issues Continued support should be provided to develop advances in the methodology and analysis used in health outcomes research.

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