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Envisioning the National Health Care Quality Report

Committee on the National Quality Report on Health Care Delivery

Margarita P. Hurtado, Elaine K. Swift, and Janet M. Corrigan, Editors

Board on Health Care Services

INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS
Washington, D.C.



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Page i Envisioning the National Health Care Quality Report Committee on the National Quality Report on Health Care Delivery Margarita P. Hurtado, Elaine K. Swift, and Janet M. Corrigan, Editors Board on Health Care Services INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESSWashington, D.C.

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Page ii NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, DC 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 competences and with regard for appropriate balance. Support for this project was provided by the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Contract No.282-99-0045, Task Order No. 2). Additional support was provided by the Commonwealth Fund, a New York City-based private, independent foundation. The views presented in this report are those of the Institute of Medicine Committee on the National Quality Report on Health Care Delivery and are not necessarily those of the funding agencies. International Standard Book Number 0-309-07343-X Additional copies of this report are available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Box 285, Washington, D.C. 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP's home page at www.nap.edu . For more information about the Institute of Medicine, visit the IOM home page at www.iom.edu. Copyright 2001 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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Page iii “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe ~ enlarge ~ INSTITUTE OF MEDICINE Shaping the Future for Health

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Page iv THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. William A. Wulf is president of the National Academy of Engineering. 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 I. Shine is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. William A. Wulf are chairman and vice chairman, respectively, of the National Research Council.

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Page v COMMITTEE ON THE NATIONAL QUALITY REPORT ON HEALTH CARE DELIVERY WILLIAM L. ROPER (Chair), Dean, School of Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina ARNOLD M. EPSTEIN (Vice Chair), John H. Foster Professor and Chair, Department of Health Policy and Management, Harvard School of Public Health, Boston, Massachusetts BECKY J. CHERNEY, President and CEO, Central Florida Health Care Coalition, Orlando, Florida DAVID C. CLASSEN, Associate Professor of Medicine, University of Utah and Vice President, First Consulting Group, Salt Lake City, Utah JOHN M. COLMERS, * Executive Director, Maryland Health Care Commission, Baltimore, Maryland ALAIN ENTHOVEN, Marriner S. Eccles Professor of Public and Private Management, Graduate School of Business, Stanford University, Stanford, California JOSÉ J. ESCARCE, Senior Natural Scientist, The RAND Corporation, Santa Monica, California SHELDON GREENFIELD, Director, Primary Care Outcomes Research Institute, New England Medical Center, Boston, Massachusetts JUDITH HIBBARD, Professor, Department of Planning, Public Policy and Management, University of Oregon, Eugene, Oregon HAROLD S. LUFT, Director and Caldwell B. Esselstyn Professor of Health Policy and Health Economics, The Institute of Health Policy Studies, University of California, San Francisco, California ELIZABETH A. McGLYNN, ** Senior Researcher, Health Sciences Program, RAND Corporation, Santa Monica, California SCOTT C. RATZAN, *** Executive Director of Health Communication Technology and Educational Innovation, Academy for Educational Development, Washington, D.C. MARK D. SMITH, President and CEO, California Healthcare Foundation, Oakland, California WILLIAM W. STEAD, Associate Vice Chancellor for Health Affairs and Director, Informatics Center, Vanderbilt University Medical Center, Nashville, Tennessee ALAN M. ZASLAVSKY, Associate Professor of Statistics, Department of Health Care Policy, Harvard Medical School, Boston, Massachusetts * As of November 2000, Program Officer, Milbank Memorial Fund. ** Served until July 2000. *** As of July 2000, Senior Technical Advisor and Population Leadership Fellow, Center for Population, Health, and Nutrition, U.S. Agency for International Development.

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Page vi Study Staff MARGARITA P. HURTADO, Study Director ELAINE K. SWIFT, Scholar-in-Residence JANET M. CORRIGAN, Director, Board on Health Care Services RACHEL FRIEDMAN, Senior Project Assistant Auxiliary Staff MIKE EDINGTON, Managing Editor JENNIFER CANGCO, Financial Advisor Copy Editor FLORENCE POILLON Consultants CHRISTINA BETHELL, The Foundation for Accountability ROBERT H. BROOK, The RAND Corporation and the UCLA Center for Health Sciences MARSHA GOLD, Mathematica Policy Research MARK MCCLELLAN, Stanford University ELIZABETH A. MCGLYNN, The RAND Corporation PAUL G. SHEKELLE, The RAND Corporation and the Greater Los Angeles Veterans Affairs Healthcare System

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Page vii REVIEWERS The report was reviewed by individuals chosen for their diverse perspectives and technical expertise in accordance with procedures approved by the National Research Council's Report Review Committee. The purpose of this independent review is to provide candid and critical comments to assist the authors and the Institute of Medicine in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. The committee wishes to thank the following individuals for their review of this report: Lu Ann Aday, University of Texas, Houston Health Science Center Ann Arvin, Stanford University School of Medicine Donald M. Berwick, Institute for Healthcare Improvement Morris F. Collen, Kaiser Permanente Medical Center Colleen Conway-Welch, Vanderbilt University, School of Nursing Robert A. Greenes, Brigham and Women's Hospital E.A. Hammel, University of California, Berkeley, Department of Demography Pamela H. Mitchell, University of Washington, School of Nursing Patricia Riley, National Academy for State Health Policy Patricia Salber, General Motors Corporation, Health Care Initiatives Shoshanna Sofaer, Baruch College, School of Public Affairs Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Richard Bonnie, John S. Battle Professor of Law and Director of the Institute of Law, Psychiatry, and Public Policy at the University of Virginia, who was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and institution.

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Page ix Preface After several decades of close attention to the cost of health care and to the uneven access to this care across the United States, we are now beginning to seriously examine health care quality. A wide range of individual studies suggests that the quality of the health care we receive is often less than optimal, if not downright poor. Yet we lack information that would allow us to systematically examine how we are doing, to determine which aspects of our health care are better or worse, and to assess whether the quality of our care is improving over time. To help fill these knowledge gaps, the Institute of Medicine (IOM) was asked by the Agency for Healthcare Research and Quality (AHRQ) to undertake a planning effort for a “national quality report on health care delivery.” In the 1999 legislation that reauthorized and renamed the agency, Congress mandated that such a report be developed and published annually starting in 2003. Specifically, the IOM and the committee appointed to conduct this study were asked to take a long-term view and to suggest how best to measure the overall quality of health care in the nation. We were to develop a format that would allow both policy makers and the general public to make year-to-year comparisons of how the health care system is doing, allowing them to determine just how much the quality of care varies or diverges from desired levels when these are specified. Furthermore, our effort is supposed to encompass the spectrum of health care settings, not just the inpatient hospital environment. Eventually, it is also supposed to allow for state- or regional-level measures, as well as

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Page x measures that compare the quality of care received by various racial, ethnic, or other groups in the population. The committee brought together expertise in health care quality measurement, health care financing and delivery, health information systems, communications, health economics, biostatistics, medicine, and public policy, as well as the perspectives of state-level health policy makers and health care purchasers. We met four times and sponsored a workshop on the state of the art in health care quality measurement and reporting that gave us the opportunity to hear from a variety of groups and experts. Through their presentations, we learned about quality measurement in other sectors, international experiences with national health care quality reports, the availability of measures to assess diverse aspects of health care quality, and other technical and policy issues related to quality measurement. The results of these efforts are the following general and specific recommendations to AHRQ on the National Health Care Quality Report. Recognizing that the Quality Report will be a dynamic document, evolving over time and that evaluation of the report and its impact should guide subsequent efforts, we sought to give broad guidance on how to undertake the vital task of assessing the quality of health care most effectively. In addition to offering a framework for thinking about health care quality, we give specific examples of the types of measures the Quality Report should include. We also provide suggestions on the criteria for making decisions about which specific measures to include or exclude and where to obtain that information. Lastly, we provide advice on how to reach the intended audiences with this valuable information. We believe that if properly prepared and communicated, the National Health Care Quality Report can become a mainstay of our nation's effort to improve health care quality. For just as today everyone from the stockbroker on Wall Street to the person in the street follows the economic indicators, someday soon the Congress, executive branch agencies, providers, consumers, and the public at large will be tracking trends in health care quality via the National Health Care Quality Report. We eagerly look forward to that new era. William L. Roper Chair Arnold M. Epstein Vice-Chair

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Page xi Acknowledgments During the course of the study, the committee and study staff were assisted by many individuals and groups who generously shared their valuable expertise. The Agency for Healthcare Research and Quality (AHRQ) made this study possible through both financial support and the technical assistance it provided. Many people at AHRQ facilitated our efforts including Nancy Foster, Project Officer and Coordinator of Quality Activities; Gregg Meyer, Director, Center for Quality Measurement and Improvement; Tom Reilly, Director, National Quality Report; Eileen Hogan, Program Analyst; Steve Cohen, Director, Division of Statistical Research and Methods; Steven Clauser, Director, Quality Measurement and Assessment Group; and, Doris Lefkowitz, Director, Division of Survey Operations, Center for Cost and Financing. Additional information and insights came from Irma Arispe, Associate Director for Science, National Center for Health Statistics; Edward Sondik, Director, National Center for Health Statistics; other members of the federal intragency working group on the National Quality Report; and the others at the Department of Health and Human Services, the Health Care Financing Administration, and other agencies and organizations who responded to our inquiries. The committee also wants to acknowledge the participants at the workshop on “Envisioning a National Quality Report on Health Care” held on May 22 and 23, 2000, in Washington, D.C. Their important contributions greatly facilitated the committee's thinking on the subject and helped to guide the committee's work. They included Irma Arispe, National Center for Health Statistics; David Bates, Brigham and Women's Hospital; Christina Bethell, Foundation for Accountability; Cybelle Bjorklund, Senate Committee on Health, Education, La-

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Page xii bor, and Pensions; Robert Brook, The RAND Corporation; Peggy Carr, National Center for Education Statistics; John M. Colmers, Maryland Health Care Commission; Suzanne Delbanco, Leapfrog Group; Claes Fornell, University of Michigan School of Business Administration; Nancy Foster, Agency for Healthcare Research and Quality; Marsha Gold, Mathematica Policy Research; Jessie Gruman, Center for the Advancement of Health; Sherrie Kaplan, Tufts University School of Medicine; Jason Lee, House Committee on Commerce; Mark McClellan, Stanford University; Elizabeth McGlynn, The RAND Corporation; Gregg Meyer, Agency for Healthcare Research and Quality; Michael Millenson, William M. Mercer, Inc; R. Healther Palmer, Harvard School of Public Health; Lee Partridge, American Human Services Association; Robert Rubin, Lewin Group; Barbara Starfield, The Johns Hopkins University; Ora Strickland, Neil Hodgson Woodruff School of Nursing, Emory University; Jack E. Triplett, Brookings Institution; John Ware, Jr., QualityMetric, Inc.; John E. Wennberg, Dartmouth Medical School; David Williams, University of Michigan; and Donald Young, Health Insurance Association of America. The committee would also like to recognize the authors of the four commissioned papers: Christina Bethell on measures of patient centeredness; Marsha Gold on potential data sources for the National Health Care Quality Report; Mark McClellan on measures of efficiency; and Elizabeth A. McGlynn, Robert H. Brook, and Paul Shekelle on measuring effectiveness and appropriateness of care. Their input was extremely valuable to the committee's deliberations. The committee benefited as well from the expert testimony of individuals and representatives from a variety of organizations experienced in quality measurement. Special thanks are extended to Donald M. Berwick, Institute for Healthcare Improvement; Christina Bethell, Foundation for Accountability; Robert J. Blendon, Harvard School of Public Health and the John F. Kennedy School of Government; Maria Hewitt, National Cancer Policy Board; Kenneth W. Kizer, National Quality Forum; Jeffrey Koshel, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services; Peggy O'Kane, National Committee for Quality Assurance; Paul Schyve, Joint Commission on Accreditation of Healthcare Organizations; and Reed Tuckson, formerly of the American Medical Association. Those who responded to the committee's call for measures on quality of care also provided very valuable input on potential measures for the Quality Report (see Appendix C). The committee and study staff would like to thank colleagues at the Institute of Medicine for their support throughout this project. Janet Corrigan, Director, Board on Health Care Services, provided guidance throughout the study. We are also grateful for the assistance of Linda Kilroy, Office of Contracts and Grants; Jennifer Cangco and Kay Harris, Office of Finance and Administration; Claudia Carl, Mike Edington, and Jennifer Otten, Office of Reports and Communications; and Sally Stanfield and Dawn Eichenlaub, National Academy

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Page xiii Press. We would also like to thank Christine Coussens, Andrea Kalfoglou, and Tracy McKay for their assistance. Support for this study was provided by the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services. Additional support was provided by the Commonwealth Fund, a New York City-based private, independent foundation.

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Page xv Contents EXECUTIVE SUMMARY 1 1     INTRODUCTION 19     Origins of the National Health Care Quality Report, 20     The IOM Committee on the National Quality Report on Health Care Delivery, 20     Defining Health Care Quality, 22     Recent Initiatives on Health Care Quality and Quality Reporting, 22     Other National and International Initiatives on Health Care Quality Measurement, 24         National Initiatives, 24         State Initiatives, 26         International Initiatives, 27     Quality Measurement and Reporting in Other Sectors, 29     Objectives of the National Health Care Quality Report, 30     Organization of the IOM Report, 34 2     DEFINING THE CONTENTS OF THE DATA SET: THE NATIONAL HEALTH CARE QUALITY FRAMEWORK 40     Recommendation, 40     Importance of the Framework, 42     National Health Care Quality Framework, 42         Overview, 42         Components of Health Care Quality, 43         Consumer Perspectives on Health Care Needs, 55

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Page xvi         Consumer Perspectives on Health Care Needs as Reflected in Care for Specific Health Conditions, 57         Using a Matrix to Portray the Framework, 60         Equity in Quality of Care as a Cross-Cutting Issue in the Framework, 62         What About Efficiency?, 64     Summary, 66 3     SELECTING MEASURES FOR THE NATIONAL HEALTH CARE QUALITY DATA SET 76     Recommendations, 76     Examining Potential Measure Selection Criteria, 80     Criteria for Selecting Individual Measures for the National Health Care Quality Data Set, 80         Major Aspects to Consider, 80         Specific Aspects to Consider When Selecting Measures, 82         Evaluating Individual Measures According to the Criteria, 87     Evaluation Criteria for the National Health Care Quality Measure Set, 88         Balance, 88         Comprehensiveness, 88         Robustness, 89     Measure Selection Process, 90         Steps in the Process of Measure Selection, 90         Role of an Advisory Body, 92         Reviewing and Updating the Measure Set, 93     Measuring Health Care Quality Comprehensively, 93     Types of Measures, 94         Role of Summary Measures, 94         Measures of the Structure, Processes, and Outcomes of Health Care, 96     Summary, 98 4     DATA SOURCES FOR THE NATIONAL HEALTH CARE QUALITY REPORT 103     Recommendations, 104     Data Source Selection Criteria, 106         Credibility and Validity of the Data, 107         National Scope and Potential to Provide State-Level Detail, 107         Availability and Consistency of the Data Over Time and Across Sources, 108         Timeliness of the Data, 108         Ability to Support Subgroup- and Condition-Specific Analyses, 109         Public Accessibility of the Data, 109     Potential Data Sources, 109         Public Data Sources, 110         Private Data Sources, 116

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Page xvii     Evaluating Data Sources for the National Health Care Quality Data Set in the Short Term, 118         Coverage of Health Care Quality Components, 124     Data Sources for the National Health Care Quality Report, 129         Data Sources in the Short Term, 129         Encouraging the Long-Term Development of Electronic Clinical Data Systems, 131     Increasing Access to the National Health Care Quality Data Set, 133     Summary, 133 5     DESIGNING THE NATIONAL HEALTH CARE QUALITY REPORT 139     Recommendation, 139     Audiences for the National Health Care Quality Report, 140     Report Guidelines, 141         Defining the Content of the Quality Report, 141         Presenting Information in the Quality Report, 143     Audience Testing the National Health Care Quality Report, 150         Audience Testing Before Report Releases, 150         Evaluative Testing of Report Releases, 151     Promoting the Quality Report, 152         Communication Channels, 152         Partnerships, 154         Evaluating the Promotion Plan, 154     Summary, 155 APPENDICES A     Workshop: Envisioning a National Quality Report on Health Care, 159 B    Designing a Comprehensive National Report on Effectiveness of Care: Measurement, Data Collection, and Reporting Strategies, 167 C     Submissions in Response to the Committee's Call for Measures from the Private Sector, 179 D     Selected Approaches to Thinking About the National Health Care Quality Report, 189 E     Quality Measure Selection Criteria, 212 GLOSSARY 223 ACRONYMS AND ABBREVIATIONS 225 BIOGRAPHICAL SKETCHES OF COMMITTEE MEMBERS 228

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Page xviii Tables, Figures, and Boxes TABLES 2.1    Components of Health Care Quality and Their Subcategories, 44 2.2    Comparison of Priority Conditions in MEPS and Healthy People 2010, 60 3.1    Most Common Criteria for Measure Selection Proposed by Other Groups, 81 4.1     Preliminary Evaluation of Public Data Sources on Health Care Quality, 120 4.2     Preliminary Evaluation of Private Data Sources on Health Care Quality, 122 B.1     Clinical Areas Included in QA Tools System by Population Group Covered, 170 B.2     Summary of the QA Tools Indicators by Type of Care, Function of Care, and Modality, 172 B.3     Sample Indicators from QA Tools System, 173 FIGURES 1    Classification matrix for measures for the National Health Care Quality Report, 8 1.1     From the National Health Care Quality Framework to the National Health Care Quality Report, 35 2.1     Consumer perspectives on health care needs, 55 2.2     Classification matrix for measures for the National Health Care Quality Report, 61 B.1     An illustration of how to present QA Tools summary results, 176 B.2     An illustration of how to present condition-specific scores within chronic care categories, 177 D.1     Model of the determinants of health, 196

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Page xix BOXES 1.1     Selective Quality Reporting in Pennsylvania, 27 1.2     The United Kingdom's National Health Service Quality Performance Reports, 29 1.3     The National Assessment of Educational Progress, 30 1.4     Healthy People 2010 Focus Areas, 33 2.1     Examples of Areas in Which Measures of Safety May Be Applied and Selected Measures, 45 2.2     Examples of Areas in Which Effectiveness Measures May Be Applied and Selected Measures, 48 2.3     Examples of Areas in Which Measures of Patient Centeredness May Be Applied and Selected Measures, 52 2.4     Examples of Areas in Which Measures of Timeliness May Be Applied and Selected Measures, 54 2.5     Sample Measures of Quality of Breast Cancer Care by Consumer Health Care Needs, 58 2.6     Questions Addressed by the National Health Care Quality Report, 65 3.1     Desirable Characteristics of Measures for the National Health Care Quality Report, 83 3.2     Steps in the Process of Defining the National Health Care Quality Measure Set, 91 3.3     Toward an Ideal Measure Set, 98 4.1     Desirable Attributes for Sources for the National Health Care Quality Data Set, 106 5.1     Guidelines on Presenting Information in the Quality Report, 143 5.2     New-Style Annual Business Reports: How to Serve Generalists and Specialists, 144 5.3     Maryland Health Care Commission's Health Maintenance Organization Quality and Performance Reports: Different Versions for Different Audiences, 145 5.4     Keeping an Annual Report Fresh: AARP's State Profiles on Health Care, 149 5.5     Newspaper Coverage of the National Health Service Performance Indicators, 153

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Page xxi Envisioning the National Health Care Quality Report

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