A FOUNDATION FOR EVIDENCE-DRIVEN PRACTICE

A Rapid Learning System for Cancer Care

WORKSHOP SUMMARY

Sharon Murphy and Margie Patlak, Rapporteurs

National Cancer Policy Forum

Board on Health Care Services

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
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Sharon Murphy and Margie Patlak, Rapporteurs National Cancer Policy Forum Board on Health Care Services

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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 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 study was supported by Contract Nos. HHSN261200900003C, 200-2005- 13434, TO #1, and Grant No. 8744 between the National Academy of Sciences and the National Cancer Institute, the Centers for Disease Control and Prevention, and the American Cancer Society, respectively. This study was also supported by the Food and Drug Administration, the American Society of Clinical Oncology, the Association of American Cancer Institutes, and C-Change. 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. International Standard Book Number-13: 978-0-309-15126-9 International Standard Book Number-10: 0-309-15126-0 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 2010 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). 2010. A Foundation for Evidence- Driven Practice: A Rapid Learning System for Cancer Care: Workshop Summary. Washing- ton, DC: The National Academies Press.

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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 Academy has a man- date 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 engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. 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 Council 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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WORKSHOP PLANNING COMMITTEE AMY ABERNETHY, Associate Professor, Duke University Medical Center; Associate Director for Population Sciences, Information Technology and Informatics, Duke Comprehensive Cancer Center, Center for Palliative Care, Durham, NC PETER B. BACH, Associate Attending Physician, Memorial Sloan- Kettering Cancer Center, Department of Epidemiology and Biostatistics, New York LYNN M. ETHEREDGE, Independent Consultant, Rapid Learning Project, George Washington University, Washington, DC PATRICIA A. GANZ, Professor of Health Services and Medicine, UCLA Schools of Medicine & Public Health, and Director, Division of Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center, Los Angeles, CA ROBERT R. GERMAN, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA CHALAPATHY NETI, Associate Director, Healthcare Transformation, IBM Research, Hawthorne, NY PAUL J. WALLACE, Medical Director for Health and Productivity Management Programs and Senior Advisor for the Care Management Institute and Avivia Health, The Permanente Federation, Kaiser Permanente, Oakland, CA Project Staff SHARON B. MURPHY, Scholar-in-Residence and Project Director CASSANDRA L. CACACE, Research Assistant MICHAEL PARK, Senior Program Assistant SHARYL J. NASS, Director, National Cancer Policy Forum ROGER HERDMAN, Director, Board on Health Care Services v

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NATIONAL CANCER POLICY FORUM1 HAROLD MOSES (Chair), Director Emeritus, Vanderbilt-Ingram Cancer Center, Nashville, TN FRED APPELBAUM, Director, Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA PETER B. BACH, Associate Attending Physician, Memorial Sloan- Kettering Cancer Center, New York EDWARD BENZ, JR., President, Dana-Farber Cancer Institute and Director, Harvard Cancer Center, Harvard School of Medicine, Boston, MA THOMAS G. BURISH, Past Chair, American Cancer Society Board of Directors and Provost, Notre Dame University, South Bend, IN MICHAELE CHAMBLEE CHRISTIAN, Retired, Division of Cancer Treatment and Diagnosis, National Cancer Institute, Washington, DC ROBERT ERWIN, President, Marti Nelson Cancer Foundation, Davis, CA BETTY R. FERRELL, Research Scientist, City of Hope National Medical Center, Duarte, CA JOSEPH F. FRAUMENI, JR., Director, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, MD PATRICIA A. GANZ, Professor, UCLA Schools of Medicine & Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center, Los Angeles, CA ROBERT R. GERMAN, Associate Director for Science (Acting), Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA ROY S. HERBST, Chief, Thoracic/Head & Neck, Medical Oncology, M.D. Anderson Cancer Center, Houston, TX THOMAS J. KEAN, Executive Director, C-Change, Washington, DC JOHN MENDELSOHN, President, M.D. Anderson Cancer Center, Houston, TX JOHN E. NIEDERHUBER, Director, National Cancer Institute 1IOM forums and roundtables do not issue, review, or approve individual docu- ments. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vi

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DAVID R. PARKINSON, President and CEO, Nodality, Inc., San Francisco, CA SCOTT RAMSEY, Full Member, Cancer Prevention Program, Fred Hutchinson Cancer Research Center, Seattle, WA JOHN WAGNER, Executive Director, Clinical Pharmacology, Merck and Company, Inc., Whitehouse Station, NJ JANET WOODCOCK, Deputy Commissioner and Chief Medical Officer, Food and Drug Administration, Rockville, MD National Cancer Policy Forum Staff ROGER HERDMAN, Director, Board on Health Care Services SHARYL NASS, Director, National Cancer Policy Forum LAURA LEVIT, Program Officer CHRISTINE MICHEEL, Program Officer ERIN BALOGH, Research Associate MICHAEL PARK, Senior Program Assistant ASHLEY McWILLIAMS, Senior Program Assistant PATRICK BURKE, Financial Associate SHARON MURPHY, Scholar-in-Residence vii

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Reviewers T his 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 process. We wish to thank the following individuals for their review of this report: JOSEPH LIPSCOMB, Emory University, Atlanta, GA STEVE E. PHURROUGH, Center for Medical Technology Policy, Baltimore, MD HAROLD C. SOX, Dartmouth Medical School, Hanover, NH PETER PAUL YU, Palo Alto Medical Foundation, Palo Alto, CA 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 James O. Armitage of University of Nebraska Medical Center. Appointed by the Institute of Medicine, he was responsible for making certain that ix

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x REVIEWERS 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 authors and the institution.

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Preface T here is a compelling public interest to advance the evidence base for cancer treatment and control measures, and to transform the way evidence is aggregated and applied in real-time, driving the process of dis- covery as a natural outgrowth of patient care, to ensure innovation, quality, safety, and value. A learning health care system for cancer would take full advantage of private and public sector databases and emerging information technology, including electronic medical records, to advance clinical cancer data, both as a public utility and a point-of-care patient-centered clini- cal decision support system. In light of substantial public investments in health information technology and comparative effectiveness research, this workshop is both timely and topical. The promise of personalized cancer medicine and targeted therapies for cancer add further urgency to foster development of rapid learning systems to know what works and deliver higher value cancer care. The goal of this workshop is to foster progress toward this vision for a rapid learning health care system for cancer. The workshop will examine the foundation stones upon which to build such a system and explore aspects of information technology which will enable such a system to operate seamlessly. An important aspect of rapid learning which will be examined is patient-driven, highlighting the rapidly expanding importance of partici- xi

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xii PREFACE patory cancer care. The impact on oncology providers and policy challenges will be examined with the aim of stimulating collaboration and action. Sincerely, Sharon B. Murphy Scholar-in-Residence, National Cancer Policy Forum, Institute of Medicine

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Contents xi PREFACE 1 INTRODUCTION 1 2 OVERVIEW 5 3 BASIC ELEMENTS AND BUILDING BLOCKS OF A RLHS FOR CANCER 13 Cancer Registries, 13 Grid Computing, 22 Comparative Effectiveness Research, 27 Guidelines and Standards for Care, 30 Decision Tools and Models, 34 4 A PRIVATE RLHS—KAISER PERMANENTE 37 5 PATIENT-DRIVEN RAPID LEARNING SYSTEMS 41 6 CHALLENGES AND OPPORTUNITIES 49 Implementation of EHRs, 49 Data Quality, Completeness, and Appropriate Analyses, 53 Harmonization and Standardization, 57 Ensuring Patient Privacy and Portability of Medical Records, 59 xiii

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xiv CONTENTS Rapid Reporting and Translation, 61 Stakeholder Cooperation and Participation, 62 Choosing Appropriate IT, 65 7 THE FEDERAL CHALLENGE OF RESPONDING TO THE NEED FOR A RLHS 69 8 SUMMARY 75 REFERENCES 79 ACRONYMS 83 APPENDIXES A WORKSHOP AGENDA 87 B SPEAKER AND MODERATOR BIOGRAPHIES 95