Appendix: Workshop Materials

AGENDA

THURSDAY, NOVEMBER 4, 1999

8:30 a.m.

WELCOME/INTRODUCTIONS/GOALS OF THE WORKSHOP

Edward Perrin, University of Washington, Workshop Chair

Margaret Hamburg, Assistant Secretary for Planning and Evaluation, DHHS, and Co-chair, DHHS Data Council

Edward Sondik, Director, National Center for Health Statistics and DHHS Statistical Advisor

8:45–9:30 a.m.

OVERVIEW PAPER/PRESENTATION

8:45 a.m.

Health Statistics: Past, Present, and Future

Presenter: Dorothy Rice, University of California, San Francisco

This session will provide an overview and historical perspective on the elements of the nation’s health statistics system.

• Who has used health statistics, and what have their information needs been?

• How do the various producers of health data



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Toward a Health Statistics System for the 21st Century: Summary of a Workshop Appendix: Workshop Materials AGENDA THURSDAY, NOVEMBER 4, 1999 8:30 a.m. WELCOME/INTRODUCTIONS/GOALS OF THE WORKSHOP Edward Perrin, University of Washington, Workshop Chair Margaret Hamburg, Assistant Secretary for Planning and Evaluation, DHHS, and Co-chair, DHHS Data Council Edward Sondik, Director, National Center for Health Statistics and DHHS Statistical Advisor 8:45–9:30 a.m. OVERVIEW PAPER/PRESENTATION 8:45 a.m. Health Statistics: Past, Present, and Future Presenter: Dorothy Rice, University of California, San Francisco This session will provide an overview and historical perspective on the elements of the nation’s health statistics system. • Who has used health statistics, and what have their information needs been? • How do the various producers of health data

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop   and statistics collectively comprise the nation’s health statistics system? • What have been some of the main challenges (technical, operational, resources, etc.) in producing health statistics? Have health statistics been fully utilized? Have they been responsive to information needs? What efforts have been made to deal with limitations in the health statistics system? How successful have they been? 9:10 a.m. Comments from invited discussant Janet Norwood, former U.S. Commissioner of Labor Statistics 9:20 a.m. Questions/Discussion 9:30–11:45 a.m. BACKGROUND PAPERS/PRESENTATIONS 9:30 a.m. Health Statistics Systems in Other Countries Jennifer Zelmer, Canadian Institute for Health Information This presentation will be based on a paper comparing how different countries organize their health statistics systems. The focus will be on Canada, Australia, and the United Kingdom. The paper will identify common models, trends, and future directions in the evolution of the vision for and management of national health statistics in these countries. (NCVHS commissioned paper) 9:45 a.m. From National Health Statistics to Health Information Systems Charlyn Black, University of Manitoba This presentation will be based on a paper discussing key assumptions and critical components of a health information system; outlines the importance of being able to make

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop   links across key areas and to examine various types and levels of investment in medical care for different populations; describes the Manitoba experience with the POPULIS system; and discusses possibilities for developing such systems in the future. (NCVHS commissioned paper) 10:00 a.m. Discussion 10:30–10:45 a.m. Break 10:45 a.m. The Numbers We Need: Health Statistics and Health Policy Richard Kronick, University of California at San Diego This presentation will focus on the health statistics needed for improving health policy, emphasizing the financing and delivery of care to the uninsured, and policy concerning managed care. The need for timely and detailed measurement of health-related quality of life will be considered. (NCVHS commissioned paper) 11:00a.m. The Children’s Health Insurance Program and Other Efforts to Respond to Children’s Health Needs Lorraine Klerman, University of Alabama at Birmingham This presentation will use the State Children’s Health Insurance Program (SCHIP) to illustrate the role health statistics played in determining a need for SCHIP and developing its provisions. Also discussed will be the health statistics that policy makers at the state and federal levels believe will be essential to demonstrate the impact of SCHIP. The need for additional statistics about children’s health status and use of services will be considered. (NCVHS commissioned paper)

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop 11:15 a.m. Discussion 11:45 a.m.–1:00p.m. Lunch 1:00–5:00 p.m. DEVELOPMENTS SHAPING FUTURE NEEDS FOR HEALTH STATISTICS Moderator: Edward Perrin, Workshop Chair In each session, these 15-minute presentations will highlight new developments, changing priorities, newly emerging concerns, and specific opportunities and challenges for the health statistics system in the 21st century. The presentations are intended to combine a “visionary” consideration of these issues with observations on how current research or operational experience relates to these views of the future. 1:00 p.m. Health Status and the Determinants of Health • Population-based assessments of health status, surveillance of illness, assessing well-being (positive health, psychosocial aspects of health, physical environment) • Presentations: Determinants of health: Clyde Hertzman, University of British Columbia Positive health: Burton Singer, Princeton University Disease and risk factor surveillance: David Fleming, Oregon Health Division Health status assessment/instruments: Robert Kaplan, University of California at San Diego 2:00 p.m. Discussion

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop 2:20 p.m. Organization, Delivery, and Financing of Health Services • Supporting the management and analysis of the organization, delivery, and financing of personal and population-based health services and their relationship to health status and health outcomes • Presentations: Health economics: Joseph Newhouse, Harvard University Health system change: Merwyn Greenlick, Oregon Health Sciences University Proprietary databases: Jacqueline Kosecoff, Protocarey Inc. 3:20 p.m. Discussion 3:40–4:00 p.m. Break 4:00 p.m. The Data Policy and Technology Environment • Innovations in information technology for collecting, analyzing, and disseminating health data; issues of privacy, confidentiality, and security of health data • Presentations: Survey methods: Sandra Berry, RAND Information technologies: William Eddy, Carnegie Mellon University Data policy issues: John Eisenberg, Agency for Healthcare Research and Quality Privacy and confidentiality issues: George Duncan, Carnegie Mellon University 5:00 p.m. Discussion 5:20 p.m. ADJOURN

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop FRIDAY, NOVEMBER 5, 1999 8:15–9:45 a.m. PANEL DISCUSSION Changing Roles and Responsibilities in the Health Statistics System Moderator: Edward Perrin, Workshop Chair This panel will bring together panelists from several segments of the health statistics system to address priorities for • changes in the health statistics system to meet new and continuing information needs and to respond to changing roles and responsibilities; • research to respond to changing needs in the health statistics system. Panelists will be asked to present for discussion specific proposals regarding steps that might be taken to meet evolving needs for health statistics. Panelists should consider needs/requirements of users and producers of health statistics and should draw on the background papers, the previous day’s discussions, and their own experiences in framing their proposals. The moderator will guide the discussion toward specific conclusions that can contribute to framing an overall agenda for steps to ready the health statistics system for the 21 st century. Panelists (from federal, state, local, and private sectors) Edward Sondik, Director, National Center for Health Statistics, and DHHS Statistical Advisor John Lumpkin, Illinois Department of Public Health

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop   Kenneth Thorpe, Rollins School of Public Health, Emory University Eileen Peterson, United Health Group 9:45–10:00 a.m. Break 10:00 a.m.–1:15 p.m. WRAP-UP SESSION Developing an Agenda for the Health Statistics System in the 21st Century Moderator: Edward Perrin, Workshop Chair 10:00–10:15 a.m. Reviewing the Issues Presenter: Miron Straf, Director (on leave), Committee on National Statistics This session will provide a brief overview of the key issues covered during the workshop sessions, setting the stage for discussion of opportunities for change and research needs. 10:15–11:15 a.m. Comments from Invited Discussants Invited discussants will reflect on implications of emerging health data needs for the health statistics system (15 minutes each). Discussants: Dorothy Rice, University of California, San Francisco Richard Kronick, University of California at San Diego Daniel Friedman, Massachusetts Department of Public Health Michael Wolfson, Statistics Canada 11:15–1:15 p.m. Identifying Opportunities for Change and Research Needs Discussion by all workshop participants to outline • an agenda for key changes to respond to needs across the health statistics system

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop   • a research agenda to respond to needs across the health statistics system • priorities for HHS and its agencies engaged in health statistics activities 1:15 p.m. ADJOURN

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop PAPERS PRESENTED The workshop papers were commissioned by the U.S. National Committee on Vital and Health Statistics (NCVHS). They are available at: <http://www.ncvhs.hhs.gov/hsvision/visiondocuments.html>. “Recent Developments in Health Information: An International Perspective,” Jennifer Zelmer, Shazeen Virani, and Richard Alvarez, Canadian Institute for Health Information. “From Health Statistics to Health Information Systems: A New Path for The 21st Century,” Charlyn Black, Noralou Roos, and Leslie Roos, University of Manitoba. “Numbers We Need: Health Statistics and Health Policy,” Richard Kronick, Department of Family and Preventive Medicine, University of California, San Diego. “The State Children’s Health Insurance Program: A Case Study,” with additional material on data needs in the area of child health, Lorraine V.Klerman, Department of Maternal and Child Health, School of Public Health, University of Alabama at Birmingham. “Building Robust Statistical Systems for Health,” Daniel Melnick, Dan Melnick Research, Inc.

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop PARTICIPANTS Presenters and Discussants Edward B.Perrin (Workshop Chair), University of Washington, and Member, Committee on National Statistics Sandra H.Berry, RAND, Santa Monica, California Charlyn Black, University of Manitoba George Duncan, Carnegie Mellon University William F.Eddy, Carnegie Mellon University, and Member, Committee on National Statistics John M.Eisenberg, Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services David W.Fleming, Oregon Health Division Daniel J.Friedman, Massachusetts Department of Public Health Merwyn R.Greenlick, Oregon Health Sciences University Margaret Hamburg, U.S. Department of Health and Human Services Clyde Hertzman, University of British Columbia Robert M.Kaplan, University of California at San Diego Lorraine V.Klerman, University of Alabama, Birmingham Jacqueline Kosecoff, Protocare Inc., Santa Monica, California Richard Kronick, University of California, San Diego John R.Lumpkin, Illinois Department of Public Health Joseph P.Newhouse, Harvard University Janet L.Norwood, former U.S. Commissioner of Labor Statistics Eileen Peterson, Center for Health Care Policy and Evaluation, United Health Group Alonzo Plough,* Seattle-King County Health Department Dorothy P.Rice, School of Nursing, University of California, San Francisco Burton H.Singer, Office of Population Research, Princeton University Edward Sondik, National Center for Health Statistics, U.S. Department of Health and Human Services Kenneth E.Thorpe, Rollins School of Public Health, Emory University Michael C.Wolfson, Statistics Canada Jennifer Zelmer, Canadian Institute for Health Information *   Unable to attend workshop, but graciously sent presentation materials that were distributed and discussed among workshop particpants.

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop Invited Guests Ross Arnett, Agency for Health Care Policy and Research Ruth Berkelman, Centers for Disease Control and Prevention, U.S. Department of Health and Human Services Linda Blankenbaker, National Center for Health Statistics, U.S. Department of Health and Human Services James Bost, National Committee for Quality Assurance Lisa Broitman, National Center for Health Statistics, U.S. Department of Health and Human Services Claire Broome, Centers for Disease Control and Prevention, U.S. Department of Health and Human Services Brett Brown, Child Trends, Inc. Olivia Carter-Pokras, Division of Policy and Data, Office of Minority Health, National Institutes of Health, U.S. Department of Health and Human Services Kathryn Coltin, Harvard Pilgrim Health Care Linda K.Demlo, National Center for Health Statistics, U.S. Department of Health and Human Services John Drabok, U.S. Department of Health and Human Services Rachel Duguay, The Lewin Group J.Michael Fitzmaurice, Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services Manning Feinleib, Johns Hopkins School of Public Health Daniel J.Friedman, Bureau of Health Statistics, Research and Evaluation, U.S. Department of Health and Human Services Dan Gaylin, U.S. Department of Health and Human Services Marsha Gold, Mathematica Policy Research Marthe Gold, City University of New York Medical School Donald Goldstone, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services Marjorie S.Greenberg, National Center for Health Statistics, U.S. Department of Health and Human Services Jan Heinrich, U.S. General Accounting Office Gerry Hendershot, National Center for Health Statistics, U.S. Department of Health and Human Services Betsy L.Humphreys, National Library of Medicine, U.S. Department of Health and Human Services

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop Edward Hunter, National Center for Health Statistics, U.S. Department of Health and Human Services William Hven, The Lewin Group Raynard Kington, National Center for Health Statistics, U.S. Department of Health and Human Services Mary Grace Kovar, National Opinion Research Center, Washington, DC Andrew Kram, National Committee on Vital and Health Statistics Thomas Louis, RAND, Arlington, VA, and Member, Committee on National Statistics Jennifer Madans, National Center for Health Statistics, U.S. Department of Health and Human Services Daniel Melnick, Dan Melnick Research, Inc. Michael Millman, U.S. Department of Health and Human Services Leyla Mohadjer, Westat, Rockville, MD Robert S.Murphy, Westat, Rockville, MD Paul Newacheck, University of California, San Francisco Roy Gibson Parrish, Centers for Disease Control and Prevention, Atlanta Steve Perente, University of Minnesota Mark Rothstein, National Committee on Vital and Health Statistics Patricia Ruggles, U.S. Department of Health and Human Services James Scanlon, U.S. Department of Health and Human Services Susan Schechter, U.S. Office of Management and Budget Paul Scheible, National Compensation Survey Elliot M.Stone, Massachusetts Health Data Consortium, Inc. Michael Stoto, The George Washington University Daniel Waldo, Health Care Financing Administration, U.S. Department of Health and Human Services Elizabeth Ward, National Committee on Vital and Health Statistics Robert Weinzimer, National Center for Health Statistics, U.S. Department of Health and Human Services National Academies’ Staff Miron L.Straf, Committee on National Statistics, National Research Council Andrew A.White, Committee on National Statistics, National Research Council Terri Scanlan, Committee on National Statistics, National Research Council

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop Agnes Gaskin, Committee on National Statistics, National Research Council Jane Durch, Institute of Medicine Maria Hewitt, Institute of Medicine Margarita Hurtado, Institute of Medicine Gooloo Wunderlich, Institute of Medicine Jonathan Zaff, Committee on Population, National Research Council