BEST CARE AT LOWER COST

The Path to Continuously Learning
Health Care in America

Committee on the Learning Health Care System in America

Mark Smith, Robert Saunders, Leigh Stuckhardt, and J. Michael McGinnis, Editors

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

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BEST CARE AT LOWER COST The Path to Continuously Learning Health Care in America Committee on the Learning Health Care System in America Mark Smith, Robert Saunders, Leigh Stuckhardt, and J. Michael ­ cGinnis, M Editors

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THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 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 report was provided by the Blue Shield of California Foundation; the Charina Endowment Fund; and the Robert Wood Johnson Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data Best care at lower cost : the path to continuously learning health care in America / Committee on the Learning Health Care System in America, The Institute of Medicine ; Mark Smith ... [et al.], editors. p. ; cm. Includes bibliographical references. ISBN 978-0-309-26073-2 (hardcover) — ISBN 978-0-309-26074-9 (pdf) I. Smith, Mark D., M.D. II. Institute of Medicine (U.S.). Committee on the Learning Health Care System in America. [DNLM: 1. Delivery of Health Care—economics—United States. 2. Costs and Cost Analysis—United States. 3. Efficiency, Organizational—economics— United States. 4. Quality of Health Care—economics—United States. W 84 AA1] 368.38′200973—dc23 2012040484 Additional copies of this report are available from the National 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 adopted 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. Best care at lower cost: The path to continuously learning health care in America. 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 engi­ neers. 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. Charles M. Vest 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 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 C ­ ouncil is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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COMMITTEE ON THE LEARNING HEALTH CARE SYSTEM IN AMERICA MARK D. SMITH (Chair), President and Chief Executive Officer, California HealthCare Foundation, Oakland JAMES P. BAGIAN, Professor of Engineering Practice, University of Michigan, Ann Arbor ANTHONY S. BRYK, President, Carnegie Foundation for the Advancement of Teaching, Stanford, CA GAIL H. CASSELL, Former Vice President, Scientific Affairs, Eli Lilly and Company, Carmel, IN JAMES B. CONWAY, Senior Fellow, Institute for Healthcare Improvement, Boston, MA HELEN B. DARLING, President, National Business Group on Health, Washington, DC T. BRUCE FERGUSON, JR., Professor and Inaugural Chairman, Department of Cardiovascular Sciences, East Carolina University, Greenville, NC GINGER L. GRAHAM, Former President and Chief Executive Officer, Amylin Pharmaceuticals, and Former Group Chairman, Guidant Corporation, Boulder, CO GEORGE C. HALVORSON, Chairman and Chief Executive Officer, Kaiser Permanente, Oakland, CA BRENT C. JAMES, Chief Quality Officer, Intermountain Health Care, Inc., Salt Lake City, UT CRAIG A. JONES, Director, Vermont Blueprint for Health, Burlington GARY S. KAPLAN, Chairman and Chief Executive Officer, Virginia Mason Health System, Seattle, WA ARTHUR A. LEVIN, Director, Center for Medical Consumers, New York, NY EUGENE LITVAK, President and Chief Executive Officer, Institute for Healthcare Optimization, Newton, MA DAVID O. MELTZER, Director, Center for Health and the Social Sciences, University of Chicago, IL MARY D. NAYLOR, Director, NewCourtland Center for Transitions and Health, University of Pennsylvania School of Nursing, Philadelphia RITA F. REDBERG, Professor of Medicine, University of California, San Francisco PAUL C. TANG, Vice President and Chief Innovation and Technology Officer, Palo Alto Medical Foundation, and Consulting Associate Professor of Medicine, Stanford University, Palo Alto, CA v

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IOM Staff ROBERT SAUNDERS, Study Director LEIGH STUCKHARDT, Program Associate JULIA C. SANDERS, Senior Program Assistant BRIAN W. POWERS, Senior Program Assistant (through July 2012) VALERIE ROHRBACH, Senior Program Assistant CLAUDIA GROSSMAN, Senior Program Officer ISABELLE VON KOHORN, Program Officer BARRET ZIMMERMANN, Program Assistant J. MICHAEL McGINNIS, Senior Scholar Consultants RONA BRIERE, Briere Associates, Inc. ALISA DECATUR, Briere Associates, Inc. vi

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Reviewers This report has been reviewed in draft form 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 that will assist the institution in making its 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. We wish to thank the following individuals for their review of this report: WYLIE BURKE, Professor and Chair, Department of Bioethics and Humanities, University of Washington, Seattle MICHAEL CHERNEW, Professor of Health Care Policy, Harvard Medical School, Boston, MA JANET CORRIGAN, Former President and Chief Executive Officer, National Quality Forum, Washington, DC JOHN HALAMKA, Chief Information Officer, CareGroup Health System, Boston, MA GEORGE ISHAM, Medical Director and Chief Health Officer, HealthPartners, Inc., Bloomington, MN STEPHEN KIMMEL, Professor of Medicine, University of Pennsylvania School of Medicine, Philadelphia ALLEN S. LICHTER, Chief Executive Officer, American Society of Clinical Oncology, Alexandria, VA vii

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viii REVIEWERS ANGELA BARRON McBRIDE, Distinguished Professor and University Dean Emerita, Indiana University School of Nursing, Lafayette MARK McCLELLAN, Director, Engelberg Center for Health Care Reform, The Brookings Institution, Washington, DC LYN PAGET, Director of Policy and Outreach, Informed Medical Decisions Foundation, Boston, MA LEWIS SANDY, Senior Vice President, Clinical Advancement, UnitedHealth Group, Minnetonka, MN EDWARD H. SHORTLIFFE, Scholar in Residence, New York Academy of Medicine, New York STEVEN SPEAR, Senior Lecturer, Engineering Systems Division, Massachusetts Institute of Technology, Cambridge JOHN TOUSSAINT, Chief Executive Officer, ThedaCare Center for Healthcare Value, Appleton, WI YULUN WANG, Chairman and Chief Executive Officer, InTouch Health, Goleta, CA DIANA ZUCKERMAN, President, National Research Center for Women & Families, Washington, DC Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the report’s conclu- sions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by coordinator ­ Robert S. Galvin, Chief Executive Officer, Equity Healthcare, The Blackstone ­ Group, New York, NY, and monitor Emmett B. Keeler, ­ rofessor of Health P Services, Pardee RAND Graduate School, University of California, Los Angeles, School of Public Health, Santa Monica, CA. Appointed by the National Research Council and Institute of Medicine, they were 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 the institution.

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Foreword Best Care at Lower Cost: The Path to Continuously Learning Health Care in America presents a vision of what is possible if the nation ap- plies the resources and tools at hand by marshaling science, information technology, incentives, and care culture to transform the effectiveness and efficiency of care—to produce high-quality health care that continuously learns to be better. More than a decade since the Institute of Medicine’s (IOM’s) To Err Is Human: Building a Safer Health System was published, the U.S. health care system continues to fall far short of its potential. Although To Err Is Human and other IOM reports, including the Crossing the Quality Chasm series, have helped spark numerous efforts to improve practices, persistent health care underperformance and high costs highlight the considerable challenge of bringing isolated successes to scale. The nation has yet to see the broad improvements in safety, accessibility, quality, or efficiency that the American people need and deserve. Leaders from every sector that bears on health have a part to play in realizing such broad improvements. Recognizing the need for cross-sector collaboration, in 2006 the IOM organized the Roundtable on Value & Science-Driven Health Care. The Roundtable convenes leaders from across the health care system—including representatives of patients and consumers, providers, manufacturers, payers, research, and policy—to help make con- tinuous improvement in performance an intrinsic part of U.S. health care. Under the guidance of its membership, the Roundtable has developed and articulated a vision of this new system—a learning health care system that links personal and population data to researchers and practitioners, ix

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x FOREWORD dramatically enhancing the knowledge base on effectiveness of interven- tions and providing real-time guidance for superior care in treating and preventing illness. A health care system that gains from continuous learning is a system that can provide Americans with superior care at lower cost. The IOM Committee on the Learning Health Care System in America was convened to explore and advance this vision of continuously learn- ing health care. The committee’s report describes the key challenges faced by the health care system today—the mounting complexity of modern medicine, the rising cost of care, and the limited return on investment—and outlines how to harness new technologies, innovations, and approaches to overcome these challenges. Importantly, the report demonstrates how a health care system that de- livers the best care at lower cost is not only necessary, but also possible. The committee has articulated detailed strategies for incorporating continuous learning and improvement into all facets of health care. The report recog- nizes the multifaceted and integrative nature of the needed transformation and outlines the multiple and concerted actions necessary across all sectors to achieve that transformation. No one individual, organization, or sector alone can effect the scope and scale of transformative change necessary for a true learning system. Rather, leadership from all sectors working in concert will be required. I would like to express my gratitude to the committee and staff who produced this report that sets forth a vision for a successful, sustainable health care system—one that continuously learns and improves. The in- sights, ideas, and recommendations offered here point the way to building a superior health care system for all Americans. Harvey V. Fineberg, M.D., Ph.D. President, Institute of Medicine

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Preface The tragic life of Dr. Ignaz Semmelweis offers an example of the chal- lenges faced in building a truly learning health care system. The Hungarian physician observed that simply washing hands could drastically reduce high rates of maternal death during childbirth. But since he could not prove a connection between hand washing and the spread of infection, he was ridiculed and ignored. Hounded out of his profession, he died in a mental hospital. More than 165 years later, half of clinicians still do not regularly wash their hands before seeing patients. The challenges today are in some ways that straightforward, and in many other ways significantly more complex. Narrow-minded rejection of scientific evidence is rarely encountered today in medicine, yet the American health care system imposes significant institutional, economic, and peda- gogic barriers to learning and adapting. For more than a decade, reports of the Institute of Medicine (IOM) have focused attention on a persistent set of problems within the Ameri- can health care system that urgently need to be addressed, including poor quality; lax safety; high cost; questionable value; and the maldistribution of care based on income, race, and ethnicity. Each report has called for substantive transformation of the nation’s health care system. Many have pointed out a disturbing paradox: the coexistence of overtreatment and undertreatment. The committee that authored this report found a similar situation: learning and adoption that are maddeningly slow—as with hand washing—coexisting with overly rapid adoption of some new techniques, devices, and drugs, with harmful results. xi

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xii PREFACE Exemplary efforts under way across the nation are working on these problems. Indeed, some members of this committee come from organiza- tions that are pacesetters in continuous learning. But the pace of change is too slow, and adoption is too spotty; the system is not evolving quickly enough. The system needs to learn more rapidly, digest what does and does not work, and spread that knowledge in ways that can be broadly adapted and adopted. This report offers a roadmap for accomplishing this vision to benefit patients and society. The committee identified two reasons for the above problems that grow more urgent every year. One is the increasingly unmanageable complexity of the science of health care. During the past half-century, there has been an explosion of biomedical and clinical knowledge, with even more dazzling clinical capabilities just over the horizon. However, the systems by which health care providers are trained, deployed, paid, and updated cannot use- fully digest this deluge of information. Second is the ever-escalating cost of care, which is widely acknowledged to be wasteful and unsustainable. Un- less ways are found to provide more efficient, lower-cost health care, more and more Americans will lose coverage of and access to care. The committee also believes that opportunities exist for attacking these problems—opportunities that did not exist even a decade ago. • Vast computational power (with associated sophistication of infor- mation technology) has become affordable and widely available. This capability makes it possible to harvest useful information from actual patient care (as opposed to one-time studies), some- thing that previously was impossible. • Connectivity allows that power to be accessed in real time virtually anywhere by professionals and patients, permitting unprecedented diffusion of information cheaply, quickly, and on demand. • Progress in human and organizational capabilities and management science can improve the reliability and efficiency of care, permitting more scientific deployment of human and technical resources to match the complexity of systems and institutions. • Increasing empowerment of patients unleashes the potential for their participation, in concert with clinicians, in the prevention and treatment of disease—tasks that increasingly depend on personal behavior change. The committee recognizes that individual physicians, nurses, techni- cians, pharmacists, and others involved in patient care work diligently to provide high-quality, compassionate care to their patients. The problem is not that they are not working hard enough; it is that the system does not adequately support them in their work. The system lags in adjusting to new

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PREFACE xiii discoveries, disseminating data in real time, organizing and coordinating the enormous volume of research and recommendations, and providing incentives for choosing the smartest route to health, not just the newest, shiniest—and often most expensive—tool. These broader issues prevent cli- nicians from providing the best care to their patients and limit their ability to continuously learn and improve. In completing its work, the committee solicited the views of more than 200 individuals, representing clinicians, patients, health care delivery lead- ers, clinical researchers, professional societies, life science industries, infor- mation technology developers, and government agencies. The information gleaned from these individuals enabled the committee to better understand the challenges to learning and improvement, as well as to learn from the experiences of those who have successfully incorporated learning and im- provement into their regular work. In addition, the IOM staff provided excellent research, analysis, and writing support for this project and assisted the committee in its deliberative process. Given the imperatives and opportunities outlined above, this is the right time for the vision proposed in this report to be realized. Developing a con- tinuously learning health care system is critical for the future of health care, as well as for the future physical and financial health of the nation. There is no simple path forward; rather, actions need to be taken by every stake- holder if this vision is to become a reality. Such concerted action will enable the nation’s health care system to evolve to one that continuously learns and improves, finally providing Americans with the best care at lower cost. Mark D. Smith, Chair Committee on the Learning Health Care System in America

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Acknowledgments Best Care at Lower Cost: The Path to Continuously Learning Health Care for America reflects the contributions of many people. The committee would like to acknowledge and express strong appreciation to those who so generously participated in the development of this report. First, we would like to thank the sponsors of this project, the Blue Shield of California Foundation, the Charina Endowment Fund, and the Robert Wood Johnson Foundation, for their financial support. The committee would also like to thank Lynn Etheredge for his assis- tance with this effort. He was a member of the committee from January 1, 2011, until August 2, 2011, and his contributions to the committee’s early thinking are very much appreciated. The committee’s deliberations were informed by presentations and dis- cussions at four meetings held between January 2011 and January 2012. Additional input was sought from numerous outside stakeholders, and we would like to thank the 137 organizations and individuals who provided their input on committee directives. A number of Institute of Medicine (IOM) staff played instrumental roles in coordinating the committee meetings and the preparation of this report, including Leigh Stuckhardt, Julia Sanders, Claudia Grossmann, Brian Powers, Valerie Rohrbach, and Isabelle Von Kohorn. The committee would also like to thank Lauren Tobias, Laura Harbold DeStefano, and Sarah Ziegenhorn for helping to coordinate the various aspects of report review, production, and publication. Committee consultant Rona Briere, Briere Associates, Inc., made indispensable contributions to the report pro- duction and publication processes. Additionally, we would like to thank xv

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xvi ACKNOWLEDGMENTS both Column Five Media and LeAnn Locher for their contributions to the graphic portrayal and cover of this report. The committee would especially like to thank Robert Saunders, study director, for his overall guidance and support. Finally, we would like to acknowledge the guidance and contri- butions of Michael McGinnis, IOM senior scholar, throughout the study process. America has the potential to realize a transformative learning health care system that could revolutionize the way care is delivered and under- stood. While great strides have already been made with new policy, sturdy dedication and engagement will continue to be instrumental as health care delivery in the United States is restructured. We look forward to building upon the ideas that have emerged in this report and achieving a learning health care system.

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Contents Abstract 1 Summary 5 The Imperatives, 8 The Vision, 17 The Path, 19 Actions for Continuous Learning, Best Care, and Lower Costs, 28 Achieving the Vision, 36 References, 38 PART I: THE IMPERATIVES 1 Introduction and Overview 47 The Need for a Continuously Learning Health Care System, 49 Study Context, 50 Statement of Task, Scope, and Methods, 57 Organization of the Report, 59 References, 60 2 Imperative: Managing Rapidly Increasing Complexity 63 Clinical Complexity, 64 Administrative Complexity, 79 References, 83 xvii

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xviii CONTENTS 3 Imperative: Achieving Greater Value in Health Care 91 Unacceptable Outcomes, 92 Unsustainable Costs, 99 Consequences of Inaction, 105 References, 105 4 Imperative: Capturing Opportunities from Technology, Industry, and Policy 111 The Digital Infrastructure: Computing, the Internet, and Mobile Technologies, 112 Lessons in Continuous Improvement from Other Industries, 117 Opportunities from a Changing Health Policy Landscape, 121 References, 126 PART II: THE VISION 5 A Continuously Learning Health Care System 133 Definition, 136 Characteristics, 136 The Path to a Continuously Learning Health Care System, 143 References, 144 PART III: THE PATH 6 Generating and Applying Knowledge in Real Time 149 Need for a New Approach to Knowledge Generation, 150 Emerging Capacities, Methods, and Approaches, 157 Creation of the Data Utility, 159 The Learning Bridge: From Knowledge to Practice, 167 People, Patients, and Consumers as Active Stakeholders, 173 Framework for Achieving the Vision, 175 References, 179 7 Engaging Patients, Families, and Communities 189 Centering Care on People’s Needs and Preferences, 191 Engaging Patients as Active Participants in Their Care, 196 Integrating Health Care and the Health of the Community, 206 Framework for Achieving the Vision, 214 References, 217

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CONTENTS xix 8 Achieving and Rewarding High-Value Care 227 Obstacles to High-Value Care, 228 Measurement of Results and Value, 232 Strategies for Achieving Transparency, 234 The Path to a System That Pays for Continuous Improvement, 239 Framework for Achieving the Vision, 245 References, 247 9 Creating a New Culture of Care 255 Organizational Leadership for Care Transformation, 257 Teaming, Partnership, and Continuity, 261 Consistency, Reliability, and Transparency of Results, 263 Alignment of Incentives Within and Across Organizations, 271 Framework for Achieving the Vision, 273 References, 275 10 Actions for Continuous Learning, Best Care, and Lower Costs 281 Achieving the Vision, 281 Patients, Consumers, Caregivers, Communities, and the Public, 290 Clinicians and Their Teachers, 292 Professional Specialty Societies, 294 Delivery System Leaders, 296 Health Insurers, 298 Employers, 300 Health Researchers, 301 Digital Technology Developers, 304 Health Product Innovators and Regulators, 306 Governance, 308 The Challenge, 309 References, 310 APPENDIXES A Glossary 313 B A CEO Checklist for High-Value Care 315 C ACA Provisions with Implications for a Learning Health Care System 389 D Biosketches of Committee Members and Staff 401

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