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APPENDIX A Workshop Agenda, Particpants, and Questions for the Working Groups WORKSHOP ON SUMMARY MEASURES OF POPULATION HEALTH STATUS AGENDA Plenary Session 2101 Constitution Avenue, N.W., Washington, D.C FRIDAY, DECEMBER 12 Lecture Room, National Academy of Sciences 7:30 a.m. Continental Breakfast and Workshop Registration 8:30 SETTING THE STAGE Welcome, Introductions, and Overview Kenneth Shine, M.D. President, Institute of Medicine Harvey Fineberg, M.D., IOM Workshop Chair Provost, Harvard University Workshop Overview Marilyn Field, Ph.D. Deputy Director, Health Care Services, IOM Marthe Gold, M.D., M.P.H., Project Consultant City University of New York Medical School 9:00 APPLICATIONS OF MEASURES Examples of efforts to apply measures to real populations: Objectives, problems encountered, lessons learned, future directions Michael Wolfson, Ph.D. Director, General Institutions and Social Statistics Branch Statistics Canada
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Edward Sondik, Ph.D. Director, U.S. National Center for Health Statistics Paige Sipes-Metzler, D.P.A. Manager, Oregon Blue Cross and Blue Shield Former Executive Director, Oregon Health Commission Louise Gunning-Schepers, Ph.D. Professor, Department of Social Medicine, Amsterdam, Netherlands James Marks, M.D., M.P.H. Director, U.S. National Center for Chronic Disease Prevention and Health Promotion Howard Seymour, M.D. Director, Health Care Development Unit, United Kingdom 11:00 METHODOLOGICAL ISSUES QALYs, DALYs, and other measures: Purposes, concepts, assumptions, data requirements, issues, problems and possible solutions Dennis Fryback, Ph.D. Professor of Preventive Medicine, University of Wisconsin Christopher Murray, Ph.D. Harvard School of Public Health 1:15 METHODOLOGICAL QUESTIONS (continued) 2:00 ETHICAL ISSUES Principles for evaluating measures, preferences and perspectives, role of ethics Norman Daniels, Ph.D. Professor of Philosophy, Tufts University Daniel Brock, Ph.D. Professor of Philosophy, Brown University 3:50 PERSPECTIVES OF DECISIONMAKERS AND POTENTIAL USERS Bruce Fried, Ph.D., and Jeffrey Kang, Ph.D. U.S. Health Care Financing Agency
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Barbara DeBuono, M.D. Commissioner of Health, State of New York Steven Safyer, M.D. Vice President, Medical Affairs, Montefiore Medical Center Jean-Pierre Poullier, Ph.D. Organization for Economic Cooperation and Development John Eisenberg, M.D. Administrator, U.S. Agency for Health Care Policy and Research 5:30 CONCLUDING REMARKS Working Groups 2001 Wisconsin Avenue, N.W., Washington, D.C. SATURDAY, DECEMBER 13 8:00 a.m. Continental Breakfast 8:30 GENERAL SESSION—CHARGE TO WORKING GROUPS 9:00 WORKING GROUPS 12:00 noon Lunch in Working Groups 1:00 p.m. REPORTS FROM WORKING GROUPS 4:00 p.m. Adjourn
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PARTICIPANTS Sudhir Anand, M.D. Acting Director, Harvard School of Public Health Harvard Center for Population and Development Studies Linda A. Bailey, J.D., M.H.S. Senior Advisor for Health Policy U.S. Department of Health and Human Services Judith Bale, Ph.D. Director, Board on International Health Institute of Medicine John Bartlett, M.D., M.P.H. Atlanta, GA Bobbie Berkowitz, Ph.D., R.N. Deputy Director, Turning Point Program, School of Public Health and Community Medicine University of Washington Stanley Berman, Ph.D. Economist, National Institutes of Health Jo Ivey Boufford, M.D. Dean, Robert F. Wagner Graduate School of Public Services New York University Peter Bouxsein, J.D. Acting Director, Office of Clinical Standards and Quality Health Care Financing Administration A. David Brandling-Bennett, MD Deputy Director, Pan American Health Organization Dan W. Brock, Ph.D. University Professor and Director, Center for Biomedical Ethics, Brown University Claire V. Broome, MD Deputy Director, Centers for Disease Control and Prevention Ronald H. Carlson Director, Office of Planning, Evaluation, and Legislation Health Resources and Services Administration Cheryl Austein Casnoff, M.P.H. Director, Public Health Policy, Office of the Assistant Secretary for Planning and Evaluation Nelba Chavez, M.D. Administrator, Substance Abuse and Mental Health Services Administration Carolyn Clancy, M.D. Director, Center for Outcomes and Effectiveness Research Agency for Health Care Policy and Research Barbara A. DeBuono, M.D., M.P.H. Commissioner of Health, State of New York John Eisenberg, M.D. Administrator, Agency for Health Care Policy and Research U.S. Department of Health and Human Services Pennifer Erickson, Ph.D. Departments of Health and Human Development and Health Evaluation Sciences Pennsylvania State University Claude Earl Fox, M.D., M.P.H. Acting Administrator, Health Resources and Services Administration Spencer Foreman, M.D. President, Motefiore Medical Center New York City Julio Frenk, M.D., M.P.H., Ph.D. Executive Vice President, Mexican Health Foundation, MEXICO Bruce M. Fried, Ph.D. Director, Center for Health Plans and Providers Health Care Financing Administration
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Kristine Gebbie, R.N., Dr.P.H., F.A.A.N. Associate Professor, Columbia University School of Nursing Louise J. Gunning-Schepers, Ph.D. Department of Social Medicine Amsterdam Medical Center, THE NETHERLANDS Jeffrey R. Harris, M.D., M.P.H. Director, Division of Prevention Research and Analytic Methods Centers for Disease Control and Prevention Frances Kamm, Ph.D. Department of Philosophy New York University Jeffrey Kang, M.D. Chief Medical Officer, Center for Health Plans and Providers Health Care Financing Administration Robert Kaplan, Ph.D. Department of Family and Preventive Medicine University of California San Diego Paul Kind Senior Researcher, University of York UNITED KINGDOM David Kindig, M.D. Ph.D. Professor of Preventive Medicine Director, WI Network for Health Policy Research University of Wisconsin-Madison Richard J. Klein Chief, Data Monitoring and Analysis Branch Division of Health Promotion Statistics National Center for Health Statistics Jeffrey P. Koplan, M.D. President, The Prudential Center for Healthcare Research Samuel P. Korper, Ph.D., M.P.H. Associate Director of National Intstitute on Aging/NIH Sr. Advisor, Substance Abuse and Mental Health Services Administration Donald P. Marazzo, M.D. Pittsburgh, PA James S. Marks, M.D., M.P.H. Director, National Center for Chronic Disease Prevention and Health Promotion Centers for Disease Control and Prevention Kristine McCoy Alexandria, VA Michael McGinnis, M.D. Scholar-in-Residence, Commission on Behavioral and Social Sciences and Education National Research Council Matthew McKenna, M.D., M.P.H. National Center for Chronic Disease Prevention and Health Promotion Centers for Disease Control and Prevention Paul Menzel, Ph.D. Provost, Pacific Lutheran University David Moriarty Centers for Disease Control and Prevention Richard H. Morrow, M.D. Director of Health Systems Johns Hopkins University Gregory Pappas, M.D., Ph.D. Senior Public Health and Population Adviser Office of International and Refugee Health Jean-Pierre Poullier, Ph.D. Office for Economic Co-operation and Development Office of the Secretariat FRANCE
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Steven M. Safyer, M.D. Vice President, Medical Affairs and Chief Medical Officer Montefiore Medical Center Howard Seymour, M.D. Director, Health Care Development Unit UNITED KINGDOM Joanna Siegel, Sc.D. Arlington Health Foundation Clay Simpson, Ph.D. Deputy Assistant Secretary for Minority Health Office of Minority Health Edward J. Sondik, Ph.D. Director, National Center for Health Statistics Dixie Snider, M.D., M.P.H. Associate Director for Science Centers for Disease Control and Prevention Susanne A. Stoiber Deputy Assistant Secretary for Program Systems U.S. Department of Health and Human Services Richard Surles, Ph.D. President, Advanced Clinical Delivery Merit Behavioral Care Steven Teutsch, M.D. Senior Research Scientist, Outcomes Research and Management Merck and Co., Inc. Joseph Thompson National Committee for Quality Assurance Martin Tobias, M.D. Ministry of Health NEW ZEALAND Reed Tuckson, M.D. Group Vice President for Professional Standards American Medical Association Peter Ubel, MD Center for Bioethics University of Pennsylvania Diane K. Wagener, Ph.D. Acting Director, Division of Health Promotion Statistics, Office of Analysis, Epidemiology and Health Promotion National Center for Health Statistics Daniel Wikler, Ph.D. Professor, Medical School University of Wisconsin Alan Williams, Ph.D. Professor of Economics University of York, UNITED KINGDOM Michael Wolfson, Ph.D. Director, General Institutions and Social Statistics Branch Statistics Canada, CANADA
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QUESTIONS FOR THE WORKING GROUPS Summary measures of population health status have been devised for various purposes. For the settings listed below, how useful would a summary measure be in providing information or insights not provided by other measures of health? What uses should have the highest priority in future efforts to develop and apply summary measures? For public health surveillance/burden-of-disease monitoring at national/regional levels. For comparing population health between/among countries/states/regions. For resource allocation at national/regional levels. For monitoring and comparing performance in managed care or similar settings. For devising risk-adjusted capitation payments for use with managed care plans or other health care providers paid in whole or in part on a per-person basis. For measuring health-related quality of life in clinical trials and contributing to cost-effectiveness analyses of alternative clinical interventions. Other (discuss). The practicality, credibility, and understandability of summary measures in different settings or for different constituencies is an important issue. What problems of understanding or credibility do you see as deterrents to the use of summary measures in the settings of most concern to you? Would these measures be comprehensible and credible to the constituencies that you serve or for whom you make decisions? What efforts (e.g., education, survey of value systems, media coverage) would contribute to their comprehensibility or credibility? Societal values (e.g., equity) may figure in decision making in different ways. For example, they may be among specific criteria used to evaluate measurement data and assess different options. Alternatively, value judgments can be incorporated in the construction of measures themselves (e.g., by assigning elements of a measure different weights). To what extent would measures be more useful if they took explicit account of distributive/equity issues (e.g., related to disability or chronic disease burdens across different sociodemographic groups based on such variables as age, race, gender, or income)? What social value or ethical issues should be emphasized in future efforts to develop and apply summary measures? Certain summary measures incorporate information about preferences for living with different kinds of disabilities or illnesses. For the uses listed in question 1, how relevant or central to credibility is the inclusion of such preferences into the measures themselves? Are there decision-making contexts where preferences are not necessary?
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Where preferences are important to incorporate, whose preferences (e.g., patient, community) are most relevant in the different decision-making contexts? What issues related to preferences should be priorities for attention in future work to develop and apply summary measures? How important is it that a single summary measure be suited to a range of different uses? What different goals or aspects of health might warrant different measures? What are the trade-offs to consider in using single versus multiple measures?
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