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THE LEARNING HEALTH SYSTEM SERIES ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE CORE MEASUREMENT NEEDS FOR BETTER CARE, BETTER HEALTH, AND LOWER COSTS Counting What Counts Workshop Summary Joe Alper, Julia Sanders, and Robert Saunders, Rapporteurs Roundtable on Value & Science-Driven Health Care

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THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 NOTICE: The workshop that is the subject of this workshop summary was ap- proved 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. This activity was supported by Contract/Grant No. 6485813 between the National Academy of Sciences and the Blue Shield of California Foundation. The views pre- sented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the activity. International Standard Book Number-13:  978-0-309-28522-3 International Standard Book Number-10:  0-309-28522-4 Additional copies of this workshop summary are available for sale from the Na- tional Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2013 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 ad- opted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2013. Core measurement needs for better care, better health, and lower costs: Counting what counts: Workshop summary. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe Advising the Nation. Improving Health.

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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 Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone 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 en- gineers. 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 engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is presi- dent 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 Insti- tute 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. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences 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 Coun- cil is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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PLANNING COMMITTEE ON CORE METRICS FOR BETTER CARE, BETTER HEALTH, AND LOWER COSTS1 CRAIG JONES (Chair), Director, Vermont Blueprint for Health DAVID ATKINS, Director of the Quality Enhancement Research Initiative, Veterans Health Administration MAUREEN BISOGNANO, President and Chief Executive Officer, Institute for Healthcare Improvement MICHAEL E. CHERNEW, Professor of Health Care Policy, Harvard Medical School DIANA S. DOOLEY, Secretary, California Health and Human Services JULIE GERBERDING, President of Merck Vaccines, Merck and Co, Inc. MARJORIE GINSBURG, Executive Director, Center for Healthcare Decisions KATE GOODRICH, Senior Technical Advisor to the Director of the Office of Clinical Standards and Quality and Chief Medical Officer, Centers for Medicare & Medicaid Services GEORGE J. ISHAM, Senior Advisor and Senior Fellow, HealthPartners, Inc. PETER MARGOLIS, Professor of Pediatrics and Director of Research at the James M. Anderson Center for Health System Excellence, Cincinnati Children’s Hospital Medical Center LEO S. MORALES, Associate Professor, Health Services and Medicine, University of California, Los Angeles JUDY MURPHY, Deputy National Coordinator for Programs and Policy, Office of the National Coordinator for HIT SAMUEL R. NUSSBAUM, Executive Vice President, Clinical Health Policy, and Chief Medical Officer, WellPoint, Inc. PATRICK REMINGTON, Associate Dean for Public Health and Professor of Population Health Sciences, University of Wisconsin School of Medicine and Public Health EDWARD J. SONDIK, Director, National Center for Health Statistics DAVID M. STEVENS, Director of the Quality Center and Associate Medical Director, National Association of Community Health Centers THOMAS B. VALUCK, Senior Vice President, Strategic Partnerships, National Quality Forum 1  Institute of Medicine planning committees are solely responsible for organizing the work- shop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

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ANNE F. WEISS, Senior Program Officer and Director of Quality/ Equality Health Care, Robert Wood Johnson Foundation NANCY WILSON, Senior Advisor to the Director, Agency for Healthcare Research and Quality IOM Staff KATE BURNS, Program Assistant CLAUDIA GROSSMANN, Senior Program Officer DIEDTRA HENDERSON, Program Officer ELIZABETH JOHNSTON, Program Assistant ELIZABETH ROBINSON, Research Associate VALERIE ROHRBACH, Senior Program Assistant JULIA C. SANDERS, Senior Program Assistant ROBERT SAUNDERS, Senior Program Officer ISABELLE VON KOHORN, Program Officer (through August 2012) BARRET ZIMMERMANN, Program Assistant J. MICHAEL MCGINNIS, Senior Scholar, Executive Director, Roundtable on Value & Science-Driven Health Care Consultant JOE ALPER, Consulting Writer vi

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ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE1 MARK B. McCLELLAN (Chair), Director, Engelberg Center, The Brookings Institution DAVID BLUMENTHAL, President, Commonwealth Fund BRUCE G. BODAKEN, Chairman, President, and Chief Executive Officer, Blue Shield of California PAUL CHEW, Chief Science Officer and Chief Medical Officer, Sanofi U.S. CAROLYN M. CLANCY, Director, Agency for Healthcare Research and Quality (ex officio) FRANCIS COLLINS, Director, National Institutes of Health (ex officio) (designee: Susan Shurin) HELEN DARLING, President, National Business Group on Health SUSAN D. DEVORE, Chief Executive Officer, Premier, Inc. JUDITH FAULKNER, Founder and Chief Executive Officer, Epic Health Systems THOMAS R. FRIEDEN, Director, Centers for Disease Control and Prevention (ex officio) (designee: Gail Janes) PATRICIA A. GABOW, Former Chief Executive Officer, Denver Health ATUL GAWANDE, General and Endocrine Surgeon, Brigham and Women’s Hospital GARY L. GOTTLIEB, President and Chief Executive Officer, Partners HealthCare System JAMES A. GUEST, President and Chief Executive Officer, Consumers Union GEORGE C. HALVORSON, Chairman and Chief Executive Officer, Kaiser Permanente MARGARET A. HAMBURG, Commissioner, Food and Drug Administration (ex officio) (designee: Peter Lurie) JAMES HEYWOOD, Co-Founder and Chairman, PatientsLikeMe RALPH I. HORWITZ, Senior Vice President, Clinical Evaluation Sciences, GlaxoSmithKline PAUL HUDSON, EVP North America, AstraZeneca BRENT C. JAMES, Chief Quality Officer and Executive Director, Institute for Health Care Delivery Research, Intermountain Healthcare MICHAEL M. E. JOHNS, Executive Vice President for Health Affairs, Emeritus, Emory University CRAIG JONES, Director, Vermont Blueprint for Health 1  Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vii

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GARY KAPLAN, Chairman and Chief Executive Officer, Virginia Mason Health System RICHARD C. LARSON, Mitsui Professor, Massachusetts Institute of Technology JAMES L. MADARA, Chief Executive Officer, American Medical Association FARZAD MOSTASHARI, National Coordinator, Office of the National Coordinator for Health IT (ex officio) MARY D. NAYLOR, Professor and Director, NewCourtland Center for Transitions and Health, University of Pennsylvania WILLIAM D. NOVELLI, Former Chief Executive Officer, AARP; Professor, Georgetown University SAM NUSSBAUM, Executive Vice President, Clinical Health Policy, and Chief Medical Officer, WellPoint, Inc. JONATHAN B. PERLIN, Chief Medical Officer and President, Clinical and Physician Services, HCA, Inc. ROBERT A. PETZEL, Under Secretary for Health, Department of Veterans Affairs (ex officio) RICHARD PLATT, Professor and Chair, Population Medicine, Harvard Medical School JOHN W. ROWE, Professor, Mailman School of Public Health, Columbia University JOE SELBY, Executive Director, PCORI MARK D. SMITH, President and Chief Executive Officer, California HealthCare Foundation GLENN D. STEELE, President and Chief Executive Officer, Geisinger Health System MARILYN TAVENNER, Administrator, Centers for Medicare & Medicaid Services (ex officio) (designee: Patrick Conway) REED D. TUCKSON, Executive Vice President and Chief of Medical Affairs, UnitedHealth Group MARY WAKEFIELD, Administrator, Health Resources and Services Administration (ex officio) DEBRA B. WHITMAN, Executive Vice President, Policy and International, AARP JONATHAN WOODSON, Assistant Secretary for Health, Department of Defense (ex officio) viii

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Institute of Medicine Roundtable on Value & Science-Driven Health Care Charter and Vision Statement The Institute of Medicine’s (IOM’s) Roundtable on Value & Science- Driven Health Care has been convened to help transform the way evi- dence on clinical effectiveness is generated and used to improve health and health care. Participants have set a goal that, by the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up- to-date clinical information, and will reflect the best available evidence. Roundtable members will work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possible ­ solutions, and the priorities for action, and will marshal the resources of the sectors represented on the Roundtable to work for sustained public– private cooperation for change. ****************************************** Vision:  Our vision is for the development of a continuously learning health system in which science, informatics, incentives, and culture are aligned for continuous improvement and innovation—with best practices seamlessly embedded in the care process and new knowledge captured as an integral by-product of the care experience. Goal:  By the year 2020, 90 percent of clinical decisions will be sup- ported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence. We feel that this presents a tangible focus for progress toward our vision, that Americans ought to expect at least this level of performance, that it should be feasible with existing re- sources and emerging tools, and that measures can be developed to track and stimulate progress. Context:  As unprecedented developments in the diagnosis, treatment, and long-term management of disease bring Americans closer than ever to the promise of personalized health care, we are faced with similarly unprecedented challenges to identify and deliver the care most appropriate for individual needs and conditions. Care that is important is often not delivered. Care that is delivered is often not important. In part, this is due to our failure to apply the evidence we have about the medical care that is most effective—a failure related to shortfalls in provider knowledge and accountability, inadequate care coordination and support, lack of insur- ance, poorly aligned payment incentives, and misplaced patient expecta- tions. Increasingly, it is also a result of our limited capacity for timely generation of evidence on the relative effectiveness, efficiency, and safety of available and emerging interventions. Improving the value of the return on our health care investment is a vital imperative that will require much

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greater capacity to evaluate high priority clinical interventions, stronger links between clinical research and practice, and reorientation of the in- centives to apply new insights. We must quicken our efforts to position evidence development and application as natural outgrowths of clinical care—to foster health care that learns. Approach:  The IOM Roundtable on Value & Science-Driven Health Care serves as a forum to facilitate the collaborative assessment and action around issues central to achieving the vision and goal stated. The chal- lenges are myriad and include issues that must be addressed to improve evidence development, evidence application, and the capacity to advance progress on both dimensions. To address these challenges, as leaders in their fields, Roundtable members work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possi- ble solutions, and the priorities for action, and marshal the resources of the sectors represented on the Roundtable to work for sustained public-private cooperation for change. Activities include collaborative exploration of new and expedited approaches to assessing the effectiveness of diagnostic and treatment interventions, better use of the patient care experience to generate evidence on effectiveness and efficiency of care, identification of assessment priorities, and communication strategies to enhance provider and patient understanding and support for interventions proven to work best and deliver value in health care. Core concepts and principles: For the purpose of the Roundtable activities, we define science-driven health care broadly to mean that, to the greatest extent possible, the decisions that shape the health and health care of Americans—by patients, providers, payers and policymakers alike—will be grounded on a reliable evidence base, will account appropriately for individual variation in patient needs, and will support the generation of new insights on clinical effectiveness. Evidence is generally considered to be information from clinical experience that has met some established test of validity, and the appropriate standard is determined according to the requirements of the intervention and clinical circumstance. Processes that involve the development and use of evidence should be accessible and transparent to all stakeholders. A common commitment to certain principles and priorities guides the activities of the Roundtable and its members, including the commitment to: the right health care for each person; putting the best evidence into practice; establishing the effectiveness, efficiency and safety of medical care delivered; building constant measurement into our health care investments; the establishment of health care data as a public good; shared responsibility distributed equitably across stakeholders, both public and private; collab- orative stakeholder involvement in priority setting; transparency in the ex- ecution of activities and reporting of results; and subjugation of individual political or stakeholder perspectives in favor of the common good.

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Reviewers This workshop summary has been reviewed in draft form by individu- als chosen for their diverse perspectives and technical expertise, in accor- dance 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 that will assist the institution in making its published workshop summary as sound as possible and to ensure that the workshop summary 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 process. We wish to thank the following individuals for their review of this workshop summary: John Auerbach, Northeastern University Maureen Bisognano, Institute for Healthcare Improvement Kevin Larsen, Office of the National Coordinator for Health Information Technology Sam Nussbaum, WellPoint, Inc. David Stevens, National Association of Community Health Centers Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by Gerry Shea, National Quality Forum. Appointed by the Insti- xi

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xii REVIEWERS tute of Medicine, he was responsible for making certain that an independent examination of this workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this workshop summary rests entirely with the rapporteurs and the institution.

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Preface Achieving progress in each aspect of health and health care requires strong measurement capabilities to guide improvement efforts, support decisions on what works best, and promote the development of a learning health system. To understand the challenges and opportunities associated with developing these measurement capabilities, the Institute of Medicine convened a workshop, with the support of the Blue Shield of California Foundation, on core metrics for measuring progress toward the health system’s three-part aim of better care, better health, and lower costs. Indi- viduals with a wide range of perspectives—including clinicians; patients and consumers; economists; researchers; leaders from health care organizations, payers, and industry; and experts from the fields of public health, health information technology, and others—met to consider the core measurement needs for assessing progress, understanding lessons learned from existing data and measurement systems, and assessing the opportunities and chal- lenges for widespread implementation. This publication summarizes the meeting’s discussions on the issues, options, and successful strategies for advancing measurement and enhancing collaborative efforts around mea- surement of the three-part aim. The Roundtable’s vision is of a health system that continuously learns and improves, generates new knowledge through each interaction with pa- tients and people, and seamlessly applies new knowledge to improve health and health care. Since its inception in 2006, the Roundtable has advanced this vision by involving stakeholders, including senior leaders, across the xiii

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xiv PREFACE health and health care system. In engaging these stakeholders in workshops and collaborative activities, Roundtable members and participants have provided guidance on the issues most important to advancing knowledge and promoting continuous improvement of the nation’s health system. Building on this groundwork, the objectives of the workshop were to discuss the vision for the nature, use, and impact of core health metrics; to identify the important principles, targets, infrastructure, processes, strate- gies, and policies; and to describe lessons from efforts at national, state, community, and organization levels. Through intensive discussions among breakout groups and among all workshop attendees, the workshop sought to explore the core measurement needs and requirements; to describe a range of priority metric categories; to consider specific metric options that will most reliably measure care outcomes, care costs, and health im- provement; and to identify opportunities to accelerate the development of the digital infrastructure, including data capture, interoperability, and consistent measurement across systems. Finally, the sessions highlighted those implementation challenges and potentially successful strategies at the national, state, community, and organizational levels that are important to engage if the nation is to successfully target and track the efforts most important to the efficiency and effectiveness of health and health care. Multiple individuals contributed valuable time toward the develop- ment of the workshop and this publication. We are especially indebted to those who provided their counsel by serving on the workshop planning committee. We would like to acknowledge and offer strong appreciation for the speakers and workshop participants whose rich discussions are summarized in this publication. In addition, a number of Roundtable staff played instrumental roles in coordinating the workshop and translating the workshop proceedings into this summary, including Rob Saunders, Julia Sanders, Valerie Rohrbach, Barret Zimmermann, and Claudia Grossmann. We would like to acknowledge the efforts of Isabelle Von Kohorn, who spearheaded the early stages of this work. We would like to recognize Joe Alper for his assistance in drafting this publication. Finally, we want to thank Daniel Bethea, Marton Cavani, Laura Harbold DeStefano, and Chelsea Frakes for helping to coordinate various aspects of review, produc- tion, and publication. Reliable assessment represents a foundational component of a continu- ously learning health system. The discussions summarized in this workshop explore the potential and challenges for expanding the measurement infra- structure and outline potential strategies and actions to catalyze progress. We believe Core Measurement Needs for Better Care, Better Health, and

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PREFACE xv Lower Costs: Counting What Counts will be a valuable resource in efforts to build the needed measurement capabilities for improving health and health care for the nation and that it sets the stage for the deeper focused assessment that can lead to consensus core metrics to guide progress going forward. Craig Jones, Chair Planning Committee on Core Metrics for Better Care, Better Health, and Lower Costs Director, Vermont Blueprint for Health J. Michael McGinnis Senior Scholar Executive Director, Roundtable on Value & Science-Driven Health Care Institute of Medicine

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Contents ACRONYMS AND ABBREVIATIONS xix 1 INTRODUCTION 1 The Role of Measurement in a Learning Health System, 2 The Roundtable and the Learning Health System Series, 3 Workshop Scope and Objectives, 4 Roadmap for the Summary, 6 References, 6 2 VISION 9 Vision and the Importance of Measuring Progress on Care, Population Health, and Costs, 10 Systems for Better Health, Better Care, and Lower Costs, 14 Discussion, 18 References, 19 3 CURRENT MEASUREMENT CAPABILITIES 21 The Role of Measurement in the National Quality Strategy, 23 Key Challenges and Opportunities for Current Measurement Capabilities, 25 Consistent and Timely Implementation of Measures, 26 Discussion, 29 References, 29 xvii

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xviii CONTENTS 4 CORE METRICS SETS IN USE 31 Accountable Care and Measuring the Three-Part Aim, 32 General Themes for Implementation, 33 Vermont Blueprint for Health: Core Metrics to Guide the Digital Infrastructure, 36 Discussion, 37 References, 38 5 SPECIFYING THE SHAPE OF A CORE METRICS SET 39 Health Care Breakout Group, 43 Population Health Breakout Group, 45 Cost Breakout Group, 47 Discussion, 48 Reference, 53 6 IMPLEMENTATION 55 Analyzing Health Status Across All Counties, 56 Implementing Statewide Measurements on Access, Cost, and Quality, 58 A Measurement Framework for Coordinated Care in Medicaid, 60 Discussion, 62 References, 63 7 BUILDING THE INFRASTRUCTURE 65 Information Technology–Enabled Quality Measurement, 66 Wisconsin Collaborative for Healthcare Quality, 68 Building the Data Infrastructure in a Health Care Environment, 72 Discussion, 74 References, 75 8 COMMON THEMES 77 Common Themes, 78 References, 91 APPENDIXES A Biographical Sketches of Workshop Speakers and Planning Committee 93 B Workshop Agenda 117 C Workshop Participants 123

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Acronyms and Abbreviations ACA Affordable Care Act ACO accountable care organization AF4Q Aligning Forces for Quality AHA American Hospital Association AHRQ Agency for Healthcare Research and Quality AMA American Medical Association CAHPS Consumer Assessment of Healthcare Providers and Systems CCO coordinated care organization CDC Centers for Disease Control and Prevention CMS Centers for Medicare & Medicaid Services DALY disability-adjusted life year EHR electronic health record HALY health-adjusted life year HEDIS Healthcare Effectiveness Data and Information Set HHS U.S. Department of Health and Human Services HIPAA Health Insurance Portability and Accountability Act HRSA Health Resources and Services Administration xix

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xx ACRONYMS AND ABBREVIATIONS IHI Institute for Healthcare Improvement IOM Institute of Medicine IT information technology NCQA National Committee for Quality Assurance NIH National Institutes of Health NQF National Quality Forum OECD Organisation for Economic Co-operation and Development ONC Office of the National Coordinator for Health Information Technology OSHA Occupational Safety and Health Organization QALY quality-adjusted life year QASC Quality Alliance Steering Committee WCHQ Wisconsin Collaborative for Healthcare