THE LEARNING HEALTH SYSTEM SERIES

ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE

PATIENTS CHARTING THE COURSE

Citizen Engagement and the Learning Health System

Workshop Summary

LeighAnne Olsen, Robert S. Saunders, and J. Michael McGinnis,
Editors and Rapporteurs

INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

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THE LEARNING HEALTH SYSTEM SERIES ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE PATIENTS CHARTING THE COURSE Citizen Engagement and the Learning Health System Workshop Summary LeighAnne Olsen, Robert S. Saunders, and J. Michael McGinnis, Editors and Rapporteurs

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. This project was supported by the Agency for Healthcare Research and Quality, AstraZeneca, Blue Shield of California Foundation, California Health Care Founda- tion, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Charina Endowment Fund, Department of Veterans Affairs, Food and Drug Administration, Johnson & Johnson, Kaiser Permanente, National Insti- tutes of Health, Office of the National Coordinator for Health IT, The Peter G. Peterson Foundation, sanofi-aventis, Stryker, and the UnitedHealth Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publica- tion are those of the author(s) and do not necessarily reflect the view of the organi- zations or agencies that provided support for this project. International Standard Book Number-13: 0-978-0-309-14993-8 International Standard Book Number-10: 0-309-14993-2 Additional copies of this report are available from The National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap. edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2011 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). 2011. Patients charting the course: Citizen engagement and the learning health system: Workshop summary. Washing- ton, 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. 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 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. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE1 Mark B. McClellan (Chair, 2011-Present), Director, Engelberg Center for Healthcare Reform, The Brookings Institution Denis A. Cortese (Chair, 2006-2011), Emeritus President and Chief Executive Officer, Mayo Clinic; Foundation Professor, ASU Donald Berwick, Administrator, Centers for Medicare & Medicaid Services (ex officio) Bruce G. Bodaken, Chairman, President, and Chief Executive Officer, Blue Shield of California David R. Brennan, Chief Executive Officer, AstraZeneca PLC Paul Chew, Chief Science Officer and CMO, sanofi-aventis U.S., Inc. Carolyn M. Clancy, Director, Agency for Healthcare Research and Quality (ex officio) Michael J. Critelli, Chief Executive Officer, Dossia Helen Darling, President, National Business Group on Health Thomas R. Frieden, Director, Centers for Disease Control and Prevention (designee: Chesley Richards) (ex officio) Patricia A. Gabow, Chief Executive Officer, Denver Health & Hospital Authority Atul Gawande, General and Endocrine Surgeon, Brigham and Women’s Hospital Gary L. Gottlieb, President and CEO, Partners HealthCare System James A. Guest, President, Consumers Union George C. Halvorson, Chairman and Chief Executive Officer, Kaiser Permanente Margaret A. Hamburg, Commissioner, Food and Drug Administration (ex officio) James Heywood, Chairman, PatientsLikeMe Carmen Hooker Odom, President, Milbank Memorial Fund Ardis Hoven, Immediate Past Board Chair, American Medical Association Brent James, Chief Quality Officer and Executive Director, Institute for Health Care Delivery Research, Intermountain Healthcare Michael M. E. Johns, Chancellor, Emory University Craig Jones, Director, Vermont Blueprint for Health Cato T. Laurencin, Director, Regenerative Engineering, University of Connecticut Stephen P. MacMillan, President and Chief Executive Officer, Stryker 1 Formerly the Roundtable on Evidence-Based Medicine, 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. v

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Sheri S. McCoy, Vice Chair, Executive Committee, Johnson & Johnson Farzad Mostashari, National Coordinator, Office of the National Coordinator for Health IT (ex officio) Elizabeth G. Nabel, President, Brigham and Women’s Hospital Mary D. Naylor, Professor and Director of Center for Transitions in Health, University of Pennsylvania Peter Neupert, Corporate Vice President, Health Solutions Group, Microsoft Corporation William D. Novelli, Former CEO, AARP; Professor, Georgetown University Jonathan B. Perlin, Chief Medical Officer and President, Clinical and Physician Services, HCA, Inc. Robert A. Petzel, Under Secretary (Health), Department of Veterans Affairs (ex officio) Richard Platt, Professor and Chair, Harvard Medical School and Harvard Pilgrim Health Care John C. Rother, Group Executive Officer, AARP John W. Rowe, Professor, Mailman School of Public Health, Columbia University Susan Shurin, Acting Director, National Heart, Lung, and Blood Institute (ex officio) Mark D. Smith, President and CEO, California HealthCare Foundation Glenn D. Steele, President and Chief Executive Officer, Geisinger Health System Reed D. Tuckson, Executive VP and Chief of Medical Affairs, UnitedHealth Group Frances M. Visco, President, National Breast Cancer Coalition Jonathan Woodson, Assistant Secretary for Health Affairs, Department of Defense (designee: Michael Dinneen) (ex officio) Workshop Planning Committee2 Jay Bernhardt, Centers for Disease Control and Prevention Michael Fordis, John M. Eisenberg Center, Baylor College Michael Lauer, National Heart, Lung, and Blood Institute Joel Kupersmith, Veterans Health Administration Murray Ross, Kaiser Foundation Health Plan Karen Smith, AstraZeneca PLC (formerly, now with Allergan, Inc.) Myrl Weinberg, National Health Council 2 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. vi

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Roundtable Staff Neha Agarwal, Intern (through August 2010) Christie Bell, Financial Associate Malcolm Biles, Program Assistant (through October 2010) Claudia Grossmann, Program Officer J. Michael McGinnis, Senior Scholar and Executive Director LeighAnne Olsen, Program Officer (through June 2010) Brian Powers, Senior Program Assistant Valerie Rohrbach, Program Assistant Julia Sanders, Program Assistant Robert Saunders, Program Officer Leigh Stuckhardt, Program Associate Kate Vasconi, Senior Program Assistant (through January 2011) Catherine Zweig, Senior Program Assistant (through June 2010) vii

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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: Adam M. Clark, FasterCures Marribeth Shannon, California HealthCare Foundation Jason Spangler, Partnership for Prevention Myrl Weinberg, National Health Council Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review of this report was overseen by Joseph E. Scherger, University of California, San Diego. Appointed by the National Research Council and the Institute of Medicine, he was respon- sible 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 editors and the institution. ix

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Institute of Medicine Roundtable on Value & Science-Driven Health Care Charter and Vision Statement The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effec- tiveness 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. ****************************************** The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effec- tiveness is generated and used to improve health and health care. We seek the development of a learning health system that is designed to generate and apply the best evidence for the collaborative healthcare choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care. Vision: Our vision is for a healthcare system that draws on the best evidence to provide the care most appropriate to each patient, emphasizes prevention and health promotion, delivers the most value, adds to learning throughout the delivery of care, and leads to improvements in the nation’s health. Goal: 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. We feel that this presents a tangible focus for progress toward our vision, that Americans ought to expect at least this level of perfor- mance, that it should be feasible with existing resources 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 insurance, poorly aligned payment incen- x

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tives, and misplaced patient expectations. 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 healthcare investment is a vital imperative that will require much greater capacity to evaluate high-priority clinical interventions, stronger links between clinical research and practice, and reorientation of the incentives to apply new insights. We must quicken our efforts to position evi- dence 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 challenges 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 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. Activities include collaborative exploration of new and expedited approaches to assessing the effectiveness of diagnostic and treatment interven- tions, better use of the patient care experience to generate evidence on effec- tiveness, 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 activi- ties, we define evidence-based medicine broadly to mean that, to the great- est extent possible, the decisions that shape the health and health care of Americans—by patients, providers, payers, and policy makers 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 appro- priate 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 healthcare investments; the estab- lishment of healthcare data as a public good; shared responsibility distrib- uted equitably across stakeholders, both public and private; collaborative stakeholder involvement in priority setting; transparency in the execution of activities and reporting of results; and subjugation of individual political or stakeholder perspectives in favor of the common good. xi

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xvi PREFACE the involvement and support of senior leadership from key healthcare stake- holders. In engaging the nation’s leaders in workshops and other activities, Roundtable members and colleagues provide guidance on topics important to a patient-centered, integrated system. The objective of this workshop was to assess the current situation and the progress that has been made toward a learning health system, with a specific focus on effective strategies to improve public and patient understanding of the system’s transformative nature and methods to involve both in the change. The workshop provided a venue for leaders to share their perspectives on methods to enhance stake- holder engagement in building a new health infrastructure, as well as how to develop effective communication strategies around evidence-based care, patient self-management, and health information technology. In the discus- sions, fundamental ideas emerged on the roles and strategies for patients, providers, and systems as elements in the learning health system. Participants articulated the numerous opportunities that have been made possible by the passage of the Patient Protection and Affordable Care Act of 2010 and the subsequent challenge of realizing the potential of this new, transformative platform. Despite this challenge, presenters focused on the use of health information technology to drive evidence-based care and the importance of improving the effectiveness of communication between patients and providers. Workshop discussions also highlighted continuous evaluation and collaboration across healthcare sectors as necessary ele- ments that must be in place for the learning health system to be actualized. The Roundtable will follow this workshop with deeper consideration of a number of the highlighted issues through future workshops, commis- sioned papers, collaborative activities, and public communication efforts. Although the challenges are formidable—as they always are with culture change—Roundtable members, colleagues, and stakeholders are committed and well-equipped to accelerate the progress of a learning health system. Multiple individuals and organizations donated their valuable time to- ward the development of this publication. We would like to acknowledge and offer strong appreciation for the contributors to this volume, for the care and thought that went into their analyses and presentations, for the ideas and observations they shared at the workshops, and for their contributions to this summary publication. In this respect, we should underscore that this volume contains a collection of individually authored papers and intends to convey only the views and beliefs of those participating in the workshops, not the express opinions of the Roundtable on Value & Science-Driven Health Care, its members, its sponsors, or the Institute of Medicine. We are especially indebted to the members of the Planning Commit- tee, which crafted this unusually productive and path-breaking discussion series. The members of this stellar group were: Jay Bernhardt (Centers for Disease Control and Prevention), Michael Fordis (John Baylor College),

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xvii PREFACE Michael Lauer (National Heart, Lung, and Blood Institute), Joel Kupersmith (Veterans Health Administration), Murray Ross (Kaiser Foundation Health Plan), Karen Smith (formerly of AstraZeneca, now with Allergan), and Myrl Weinberg (National Health Council). A number of Roundtable staff played instrumental roles in coordinat- ing the workshops and translating the workshop proceedings into this summary, including Neha Agarwal, Christie Bell, Malcolm Biles, Claudia Grossmann, LeighAnne Olsen, Brian Powers, Robert Saunders, Kate Vasconi, and Catherine Zweig. We would also like to thank Greta Gorman, Christine Stencel, Vilija Teel, and Jordan Wyndelts for helping to coordinate the various aspects of review, production, and publication. We have the potential for a transformative learning health system that could revolutionize the way care is delivered and understood. While great strides have already been made with new policy, sturdy dedication and engagement will continue to be instrumental as healthcare delivery in the United States is restructured. We look forward to building upon the ideas that have emerged in this workshop and realizing a learning health system. Denis A. Cortese Chair, Roundtable on Value & Science-Driven Health Care (2006-2011) Mark B. McClellan Chair, Roundtable on Value & Science-Driven Health Care (2011-Present) J. Michael McGinnis Executive Director, Roundtable on Value & Science- Driven Health Care

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Contents Abbreviations and Acronyms xxiii Synopsis and Overview 1 1 The Learning Health System 33 Introduction and Context, 33 The Roundtable and the Learning Health System Series, 35 Healthcare Reform and a Learning Health System, 38 Creating a Learning Culture, 39 The Learning Health System in 2010 and to Come, 40 Harvey V. Fineberg 2 Clinical Research, Patient Care, and Learning That Is Real-Time and Continuous 47 Introduction, 47 Comparative Effectiveness Research: Patient, Clinician, and Policy Needs, 48 Patrick Conway Health Systems as Research Platforms: Enhancing Science, Value, and Innovation, 52 John Noseworthy and Sherine Gabriel Enhancing the Culture of Patient Contributions to Learning in Health Care, 59 Diane Simmons and Kenneth Getz xix

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xx CONTENTS 3 Clinical Data as a Public Good for Discovery 69 Introduction, 69 Information Needs for a Learning Health System, 70 Farzad Mostashari Opening Access to High-Value Data Sets, 74 Todd Park Ensuring Data Integrity: Adressing Privacy Protection and Proprietary Concerns, 87 Don E. Detmer 4 Engaging Patients to Improve Science and Value in a Learning Health System 95 Introduction, 95 Investing Patients in the Research and Continuous Improvement Enterprise, 96 Sharon F. Terry Public and Patient Strategies to Improve Health System Performance, 103 James B. Conway Communicating with Patients About Their Concerns, Expectations, and Preferences, 110 Karen Sepucha 5 Health Information Technology as the Engine for Learning 119 Introduction, 119 The Meaningful Use of Health Information Technology, 120 David Blumenthal New Classes of Data, New Opportunities to Learn, 123 Daniel R. Masys, Jack M. Starmer, and Jill M. Pulley Web 2.0 and Patient Engagement, 128 Kamal Jethwani and Joseph C. Kvedar 6 Patients, Clinical Decisions, and Health Information Management in the Information Age 137 Introduction, 137 Public and Patient Information Access and Use as a Core Care Component, 138 George D. Lundberg Health Information Technology–Based Approaches to Health Management, 145 Paul C. Tang

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xxi CONTENTS Health and Disease Management Outside the Clinic Doors: There’s an App for That!, 149 Doriane C. Miller 7 Applying Evidence for Patient-Centered Care: Standards and Expectations 159 Introduction, 159 The Role of Evidence in Patient-Centered Care, 160 Dale Collins Vidal Evidence Standards and Application: Right Care, Right Patient, Right Time, 167 Clifford Goodman Translation and Communication Needs for Care in the Face of Uncertain Evidence, 177 Fran M. Visco 8 Team-Based Care and the Learning Culture 187 Introduction, 187 Practical Experience with Collaborative Models in the Health Professions, 188 Allan S. Frankel and Michael Leonard Measures and Strategies for Clinical Excellence and Continuous Improvement, 196 Joyce Lammert Care Cooperation and Continuity Across Clinicians, Facilities, and Systems, 202 Alice Bonner, Craig Schneider, and Joel S. Weissman 9 Incentives Aligned with Value and Learning 213 Introduction, 213 Paying for Value and Science-Driven Care, 214 Michael E. Chernew Generating Evidence to Guide Care, 219 Richard Gilfillan Creating a Learning Culture, 228 Anne F. Weiss and Bianca M. Freda 10 Common Themes and Opportunities for Action 235 Introduction, 235 Common Themes, 235 Strategies for Moving Forward, 239 Looking Ahead to Next Steps, 242

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xxii CONTENTS Appendixes A Workshop Agenda 247 B Biographical Sketches of Workshop Participants 253 C Workshop Attendee List 273 D The Learning Health System Series: Workshop Common Themes 283

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Abbreviations and Acronyms ACA Patient Protection and Affordable Care Act (2010) ACGME Accreditation Council for Graduate Medical Education AF4Q Aligning Forces for Quality AHRQ Agency for Healthcare Research and Quality AMA American Medical Association AMIA American Medical Informatics Association ARRA American Reinvestment and Recovery Act (2009) CCCP Connected Cardiac Care Program CER comparative effectiveness research CMS Centers for Medicare & Medicaid Services CNVs copy number variants CRM crew resource management CRS Care Records Service (UK) DHMC Dartmouth Hitchcock Medical Center EGAPP Evaluation of Genomic Applications in Practice and Prevention EHR electronic health record eMERGE electronic MEdical Records and GEnomics EMR electronic medical record FCC Federal Coordinating Council FDA Food and Drug Administration xxiii

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xxiv ABBREVIATIONS AND ACRONYMS GDP gross domestic product GEDDI Genetics for Early Disease Detection and Intervention to Improve Health Outcomes GHP Geisinger Health Plan GHS Geisinger Health System GWAS genome-wide association study HCC Hierarchical Condition Categories HEDIS Healthcare Effectiveness Data and Information Set HHS Department of Health and Human Services HIPAA Health Insurance Portability and Accountability Act HIT health information technology HITECH Health Information Technology for Economic and Clinical Health Act (2009) HPV human papillomavirus IHI Institute for Healthcare Improvement INR International Normalized Ratio IOM Institute of Medicine IPADS International Patient Decision Aids Standards IRB institutional review board IT information technology JAMA Journal of the American Medical Association MA Medicare Advantage NBCC National Breast Cancer Coalition NCI National Cancer Institute NHS (UK) National Health Service NIH National Institutes of Health NWHIN Nationwide Health Information Network OECD Organisation for Economic Co-operation and Development OMB Office of Management and Budget ONC Office of the National Coordinator for Health Information Technology PAMF Palo Alto Medical Foundation PCMH patient-centered medical home PCORI Patient-Centered Outcomes Research Institute PheWAS phenome-wide scanning PHR personal health record

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xxv ABBREVIATIONS AND ACRONYMS PSA prostate-specific antigen PXE pseudoxanthoma elasticum RCT randomized controlled trial REP Rochester Epidemiology Project RPIWs Rapid process improvement workshops RWJF Robert Wood Johnson Foundation SCP shared care plan SHARP Strategic Health IT Advanced Research Projects SNP single nucleotide polymorphism SORT Strength of Recommendation Taxonomy SR systematic review SSRI selective serotonin reuptake inhibitor STEPPS Strategies and Tools to Enhance Performance and Patient Safety USPSTF U.S. Preventive Services Task Force VAP ventilator-associated pneumonia VMMC Virginia Mason Medical Center

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