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Health Outcomes for Older People: Questions for the Coming Decade Health Outcomes for Older People: Questions for the Coming Decade Committee to Develop an Agenda for Health Outcomes Research for Elderly People Jill C.Feasley, Editor Division of Health Care Services INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1996
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Health Outcomes for Older People: Questions for the Coming Decade National Academy Press 2101 Constitution Avenue, N.W. Washington, D.C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competencies and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth Shine is president of the Institute of Medicine. Support for this project was provided by the Greenwall Foundation and the National Research Council. The views presented are those of the Institute of Medicine Committee to Develop an Agenda for Health Outcomes Research for Elderly People and are not necessarily those of the funding organizations. International Standard Book No. 0-309-05636-5 Additional copies of this report are available from: National Academy Press 2101 Constitution Avenue, N.W. Box 285 Washington, DC 20055 Call (800) 624–6242 or (202) 334–3313 (in the Washington metropolitan area). Copyright 1996 by the National Academy of Sciences. All rights reserved. Printed in the United States of America
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Health Outcomes for Older People: Questions for the Coming Decade COMMITTEE TO DEVELOP AN AGENDA FOR HEALTH OUTCOMES RESEARCH FOR ELDERLY PEOPLE John Eisenberg,* Chair, Chairman and Physician-in-Chief, Georgetown University Medical Center Elena M.Andresen, Associate Professor, Department of Community Health, School of Public Health, Saint Louis University Teresa A.Dolan, Acting Associate Dean, College of Dentistry, University of Florida Charles J.Fahey,* Marie Ward Doty Professor of Aging Studies, Third Age Center, Fordham University Anne Jackson, Professor of Nursing, Emerita, City University of New York Marianne Laouri, Director, Quality Improvement and Outcomes Research, PacifiCare Health Systems, Cypress, California Vincent Mor, Director, Center for Gerontology and Health Care Research, Brown University Linda J.Redford, Director, National Resource and Policy Center on Rural Long Term Care, University of Kansas Medical Center Lisa Rubenstein, Associate Clinical Professor of Geriatric Medicine, School of Medicine, University of California, Los Angeles Paul Schyve, Senior Vice President, Joint Commission on Accreditation of Healthcare Organizations, Oakbrook Terrace, Illinois Cathy Sherbourne, Behavioral Scientist, The RAND Corporation, Santa Monica, California Eric G.Tangalos, Associate Professor of Medicine, Mayo Clinic, Rochester, Minnesota Joan Teno, Associate Director, Center to Improve Care of the Dying, The George Washington University Jürgen Unützer, Assistant Professor, Department of Psychiatry, School of Medicine, University of Washington William G.Weissert, Professor of Health Management and Policy, School of Public Health, and Research Scientist, Institute of Gerontology, University of Michigan, Ann Arbor Nancy Whitelaw, Associate Director, Center for Health System Studies, Henry Ford Health System, Detroit, Michigan Mark E.Williams, Director, Program on Aging, School of Medicine, University of North Carolina, Chapel Hill * Member, Institute of Medicine.
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Health Outcomes for Older People: Questions for the Coming Decade Study Staff Jill Feasley, Program Officer Marilyn Field, Deputy Director, Division of Health Care Services Chloe Brooke, Intern Richard Julian, Project Assistant Annice Hirt, Administrative Assistant Clyde Behney, Director, Division of Health Care Services
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Health Outcomes for Older People: Questions for the Coming Decade Preface The nation’s press made much ado recently when President Clinton celebrated his 50th birthday. As one of the first baby boomers to become eligible for membership in the American Association of Retired Persons, the president symbolized how close the demographic bulge in the American population known as the “Baby Boom” is getting to senior citizenship. The implications for American society as baby boomers become senior citizens in the coming decades are sizable. The rising cost of medical care in this country is already on a collision course with both the Medicare trust fund and the public’s desire to limit taxes, even before the first boomers have reached Medicare eligibility. Modern medicine’s capacity to avert death from acute diseases converts these diseases into chronic conditions that will, in turn, command even more of the health care budget. There will be more older Americans, living longer, with more chronic diseases; and we will have more capability to treat them. The task the Institute of Medicine assigned to the committee that developed this report was not to predict the future but rather to suggest a framework for developing new understanding of the outcomes of health care for older people. We will increasingly face a bewildering number of choices—ranging from which type of health plan to join to what type of care to follow when we are ill or dying. It is this committee’s hope that as we choose among these options we can do so with solid information about the likely results or outcomes of our decisions.
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Health Outcomes for Older People: Questions for the Coming Decade Interest in examining health outcomes is not new. Indeed at the beginning of this century, a young surgeon in Boston named Ernest Amory Codman pioneered and actively advocated the use of his “end results idea,” which he later described as the common-sense notion that every hospital should follow every patient it treats, long enough to determine whether or not the treatment has been successful. And then to inquire “if not, why not” with a view to preventing similar failures in the future.* Over the decades, this common-sense notion has guided important advances in the conduct of health outcomes research. Today’s researchers can determine much more than simply whether a patient lived or died after receiving a particular treatment. With a continuously growing assortment of measurement instruments and tools at their disposal, they can examine a treatment’s effect on a person’s overall quality of life and ability to function—physically, cognitively, and socially. Research funded by both the public and the private sector has produced ways of carrying out sophisticated quantitative and qualitative analysis, and sources of information about health are increasingly being stored in large computerized databases. The results of health outcomes research have wide applicability. Individuals and their families can base important decisions about treatment goals on information about the health outcomes of patients with similar conditions. Practitioners can use models developed by health outcomes researchers to predict a patient’s future level of functioning and to select appropriate interventions. Administrators of health plans and integrated delivery systems can study ways to reduce costs while improving the quality of care delivery. Policymakers can devise reimbursement incentives to help achieve desired outcomes. Yet, many questions remain unanswered or unexplored. These questions form the basis of the agenda of research topics presented in this report. The committee believes these topics warrant attention from the policy and research communities—and from the public- and private-sector funders of research—within the next few years. Although older people are the focus of this agenda, the research endorsed here will benefit young and old alike if it succeeds in advancing the field of health outcomes research and in improving the way health * E.A.Codman, The Shoulder: Rupture of the Supraspinatus Tendon and Other Lesions in or about the Subacromial Bursa (Boston: Thomas Todd Company, 1934), cited in L.I.Iezzoni, Risk Adjustment for Measuring Health Care Outcomes (Ann Arbor, Mich.: Health Administration Press, 1994).
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Health Outcomes for Older People: Questions for the Coming Decade care is provided. The report is offered in the hope that an effective outcomes research strategy will maximize the returns from the nation’s health care enterprise and its biomedical research investment. John M.Eisenberg, M.D., Chair Committee to Develop an Agenda for Health Outcomes Research for Elderly People
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Health Outcomes for Older People: Questions for the Coming Decade Acknowledgments Special thanks are due to several individuals to whom the committee and staff are particularly indebted. Kathleen Lohr, former director of the Institute of Medicine’s (IOM) Division of Health Care Services and current senior director of Health Services Research at the Research Triangle Institute, oversaw the initial work on this project and continued to provide helpful and timely advice even after she assumed her current duties. Holly Dawkins, former research assistant, also provided support at the project’s beginning before relocating to South Carolina. They are both greatly missed by their colleagues. Initial direction for this study was provided by a planning group that met in April 1996. That meeting was chaired by Roger Herdman, IOM senior scholar, and the participants were Elena Andresen, Molla Donaldson, Pamela Doty, Charles J.Fahey, Marilyn Field, Anne Jackson, Stephen F.Jencks, Claire Macklan, Vincent Mor, Connie Pechura, Linda Redford, Paul Schyve, Cathy Sherbourne, Albert Siu, William Stubing, Eric Tangalos, Joan Teno, Jürgen Unützer, and William Weissert. Meeting participants ate lunch with a group of senior citizens attending the IONA Senior Services/St. Mary’s Court lunch program in the Foggy Bottom neighborhood of Washington, D.C. Lillian Gordon, the program’s site manager, graciously hosted our crowd with her renowned aplomb and style. We are especially thankful to the older people who spoke with us after lunch for their willingness to discuss the health care issues they felt would be most important to address over the next decade.
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Health Outcomes for Older People: Questions for the Coming Decade Contents SUMMARY 1 INTRODUCTION AND BACKGROUND 7 Health Outcomes Research for Older People, 7 Origins of this Report and Study Approach, 11 Audience for this Report, 13 Organization of this Report, 13 RECOMMENDATIONS: RESEARCH ISSUES 15 Health-Related Quality of Life, 16 Satisfaction with Care, 20 “Toolbox” of Outcomes Measures and a Core Set of Outcomes Measures, 23 Practice Patterns and Interventions and Their Effect on Outcomes, 26 Involvement in Care Decisionmaking, 29 Education and Dissemination of Outcomes Information, 31 Financing Systems, 33 Service Delivery and Utilization, 36 Transitions, 39 Quality Assessment and Improvement, 41
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Health Outcomes for Older People: Questions for the Coming Decade RECOMMENDATIONS: RESEARCH INFRASTRUCTURE NEEDS 45 Workforce Issues, 46 Conduct of Research, 48 Data Quality, 50 Data Management Systems, 52 Methodological and Analytic Issues, 54 APPENDIX: WORKSHOP AGENDA AND PARTICIPANTS 57 BIBLIOGRAPHY 63