PARTNERING
with PATIENTS

to Drive Shared Decisions,
Better Value,
and Care Improvement

WORKSHOP PROCEEDINGS

Roundtable on Value & Science-Driven Health Care

INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu



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Roundtable on Value & Science- Driven He o - ealth Care

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 NOTICE: The workshop that is the subject of these workshop proceedings 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. This activity was supported by Grant No. 3463 between the National Academy of Sciences and the Gordon and Betty Moore Foundation and Grant No. 7781311 between the National Academy of Sciences and the Blue Shield of California Foundation. The views presented 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: 978-0-309-28896-5 International Standard Book Number-10: 0-309-28896-7 Additional copies of these workshop proceedings are available for sale 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 2014 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). 2014. Partnering with patients to drive shared decisions, better value, and care improvement: Workshop proceedings. Washington, DC: The National Academies Press.

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The Nation Academy of Sciences is a private, nonpr nal o rofit, self-perpet tuating society of distinguished scholars enga d aged in scientific an engineering research, dedica nd ated to the furthherance of scien and technology and to the use for the g nce eir general welfare. Up the authority of the charter granted to it by the Congress in 1863, the Acad pon y g n demy has a man ndate that requir it to res advise the federal governme on scientific and technical matters. Dr. Ralp J. Cicerone is president of the National Acad f ent m ph s e demy of Sciences. The Nation Academy of Engineering was established in 1964, under t charter of th National Acad nal f w i the he demy of Science as a es, parallel orga anization of outs standing enginee It is autonom ers. mous in its admi inistration and in the selection o its members, s n of sharing with the National Academ of Sciences the responsibilit for advising the federal gov my t ty vernment. The National Acade emy of Engineering also sponsors engineering programs aimed at meeting natio g a onal needs, enc courages educat tion and researc and ch, recognizes the superior achi t ievements of eng gineers. Dr. C. D. Mote, Jr., is pr D resident of the N National Academ of Engineerin my ng. The Institu of Medicine was established in 1970 by th National Aca ute e he ademy of Scien nces to secure th services of e he eminent members of appropriate pro f ofessions in the examination of policy matters p e p pertaining to the health of the pu ublic. The Institu acts ute under the re esponsibility giv to the Nation Academy of Sciences by its congressional charter to be an adviser to the federal ven nal f s n government and, upon its own initiative, to identify issues of medical care research, and education. Dr. Harvey V. Fine t o o s e, d eberg is president of the Institute of Medicine. f The National Research Co ouncil was organ nized by the Nattional Academy of Sciences in 1 1916 to associate the broad com e mmunity of science and technology with the Aca y ademy’s purpose of furthering knowledge an advising the federal gover es g nd e rnment. Functioning in accordance with general po g olicies determine by the Acade ed emy, the Counc has become t principal op cil the perating agency of both the Nation Academy of Sciences and the National Ac b nal f cademy of Eng gineering in pro oviding services to the government the public, and the scientific and engineering communities. T Council is ad t, d a The dministered join by both Aca ntly ademies and the Institute of Medicin Dr. Ralph J. Cicerone and Dr C. D. Mote, Jr. are chair and v chair, respectively, of the N ne. C r. ., vice National Research Co ouncil. www.natio onal-academie es.org

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PLANNING COMMITTEE ON PARTNERING WITH PATIENTS TO DRIVE SHARED DECISIONS, BETTER VALUE, AND CARE IMPROVEMENT1 CHRISTINE BECHTEL (Chair), Advisor and Former Vice President, National Partnership for Women & Families TERRY ADIRIM, Director, Office of Special Health Affairs, Health Resources and Services Administration LEAH BINDER, Chief Executive Officer, The Leapfrog Group VERONICA GOFF, Vice President, Institute on Health Care Costs and Solutions, National Business Group on Health (formerly) MARK GORMAN, Patient Advocate, Former Director of Survivorship Policy, National Coalition for Cancer Survivorship PAUL GRUNDY, Global Director of Healthcare Transformation, IBM ART LEVIN, Director, Center for Medical Consumers JIM MANGIA, President and Chief Executive Officer, St. John’s Well Child & Family Center LYN PAGET, Managing Partner, Health Policy Partners ERIC RACINE, Vice President, Advocacy, Sanofi U.S. SUSAN C. REINHARD, Director, Public Policy Institute, AARP CRAIG ROBBINS, Medical Director, Clinical Guidelines (KP Colorado), Kaiser Permanente JOHN SANTA, Director, Consumer Reports Health Ratings Center, Consumers Union SUSAN SHERIDAN, Deputy Director, Patient Engagement, Patient-Centered Outcomes Research Institute SUSAN BROWN TRINIDAD, Research Scientist, University of Washington IOM Staff KATE BURNS, Program Assistant (from July 2013) CLAUDIA GROSSMANN, Senior Program Officer DIEDTRA HENDERSON, Program Officer (from March 2013) ELIZABETH JOHNSTON, Program Assistant VALERIE ROHRBACH, Senior Program Assistant JULIA SANDERS, Senior Program Assistant (through August 2013) ROBERT SAUNDERS, Senior Program Officer LEIGH STUCKHARDT, Research Associate (through January 2013) ISABELLE VON KOHORN, Program Officer (through September 2012) BARRET ZIMMERMANN, Program Assistant (through October 2013) J. MICHAEL MCGINNIS, Senior Scholar, Executive Director, Roundtable on Value & Science-Driven Health Care 1 Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop proceedings rests with the institution. v

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ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE1 MARK B. MCCLELLAN (Chair), Director, Engelberg Center, The Brookings Institution DAVID BLUMENTHAL, President, The Commonwealth Fund BRUCE G. BODAKEN, Former Chairman 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 Health Care 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 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, Executive Vice President, AstraZeneca BRENT C. JAMES, Chief Quality Officer, Intermountain Healthcare MICHAEL M. E. JOHNS, Chancellor, Emory University CRAIG JONES, Director, Vermont Blueprint for Health GARY KAPLAN, Chairman and Chief Executive Officer, Virginia Mason Health System DARRELL G. KIRCH, President and Chief Executive Officer, AAMC RICHARD C. LARSON, Mitsui Professor, Massachusetts Institute of Technology JAMES L. MADARA, Chief Executive Officer, American Medical Association MARY D. NAYLOR, Director, NewCourtland Center, University of Pennsylvania FARZAD MOSTASHARI, National Coordinator, Office of the National Coordinator for Health Information Technology (Ex Officio) WILLIAM D. NOVELLI, Former Chief Executive Officer, AARP; Professor, Georgetown University SAM R. NUSSBAUM, Chief Medical Officer, WellPoint, Inc. JONATHAN B. PERLIN, Chief Medical Officer, HCA, Inc. ROBERT A. PETZEL, Under Secretary for Health, Department of Veterans Affairs (Ex Officio) RICHARD PLATT, Chair, Population Medicine, Harvard Medical School JOHN W. ROWE, Former Chairman and Chief Executive Officer, Aetna; Professor, Columbia University 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 institution. vii

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JOE V. SELBY, Executive Director, Patient-Centered Outcomes Research Institute 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 V. TUCKSON, Former Executive Vice President, UnitedHealth Group; Managing Director, Tuckson Health 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 Affairs, Department of Defense (Ex Officio) viii

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Contents 1 INTRODUCTION 1 2 PROCEEDINGS: DAY 1 3 3 PROCEEDINGS: DAY 2 65 APPENDIXES A Workshop Agenda 175 B Biographical Sketches of Workshop Speakers and Planning Committee Members 183 C Workshop Participants 197 ix

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