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Sharyl J. Nass and Theresa Wizemann, Rapporteurs National Cancer Policy Forum Board on Health Care Services
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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. This study was supported by Contract Nos. HHSN261200900003C and 200-2005- 13434 TO #1 between the National Academy of Sciences and the National Cancer Institute and the Centers for Disease Control and Prevention, respectively. In addition, the National Cancer Policy Forum is supported by the American Association for Cancer Research, the American Cancer Society, the American Society of Clinical Oncology, the Association of American Cancer Institutes, Bristol-Myers Squibb, C-Change, the CEO Roundtable on Cancer, Novartis Oncology, and the Oncology Nursing Society. The views presented in this publication do not necessarily reflect the view of the organizations or agencies that provided support for this project. International Standard Book Number-13: 978-0-309-25948-4 International Standard Book Number-10: 0-309-25948-7 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 2012 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Cover credit: Design by Casey Weeks. 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). 2012. Informatics needs and challenges in cancer research: Workshop summary. Washington, 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 COMMITTEE1 SHARON B. MURPHY (Chair), Scholar-in-Residence, National Cancer Policy Forum, Board on Health Care Services, Institute of Medicine, Washington, DC AMY P. ABERNETHY (Co-Vice Chair), Associate Professor of Medicine, Division of Medical Oncology, Department of Medicine, Duke University School of Medicine; Director, Duke Cancer Care Research Program, Durham, NC MARCIA KEAN (Co-Vice Chair), Chair, Strategic Initiatives, Feinstein Kean Healthcare, Cambridge, MA ADAM CLARK, Patient Advocacy Consultant; Founder, MedTran Health Strategies, Washington, DC WILLIAM S. DALTON, CEO, M2Gen Personalized Medicine Institute, Moffitt Cancer Center & Research Institute, University of South Florida, Tampa BRADLEY H. POLLOCK, Professor and Chair, Henry B. Dielmann Distinguished University Chair, Department of Epidemiology and Biostatistics, School of Medicine, University of Texas Health Science Center at San Antonio LAWRENCE N. SHULMAN, Chief Medical Officer and Senior Vice President for Medical Affairs and Chief, Division of General Oncology, Dana-Farber Cancer Institute, Boston, MA Project Staff ERIN BALOGH, Associate Program Officer PAMELA LIGHTER, Research Assistant MICHAEL PARK, Senior Program Assistant SHARYL J. NASS, Director, National Cancer Policy Forum ROGER HERDMAN, Director, Board on Health Care Services 1Institute of Medicine planning committees are solely responsible for organizing the workshop, 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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NATIONAL CANCER POLICY FORUM1 JOHN MENDELSOHN (Chair), Co-Director, Khalifa Institute for Personalized Cancer Therapy, M.D. Anderson Cancer Center, Houston, TX PATRICIA A. GANZ (Vice-Chair), Professor, University of California, Los Angeles, School of Medicine & Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center AMY P. ABERNETHY, Associate Professor of Medicine, Duke University School of Medicine, and Director, Duke Cancer Care Research Program, Durham, NC FRED APPELBAUM, Director, Clinical Research Division, Fred H utchinson Cancer Research Center, Seattle, WA PETER B. BACH, Attending Physician, Memorial Sloan-Kettering Cancer Center, New York, NY EDWARD BENZ, JR., President, Dana-Farber Cancer Institute, and Director, Harvard Cancer Center, Harvard Medical School, Boston, MA MONICA BERTAGNOLLI, Professor of Surgery, Harvard Medical School, Boston, MA OTIS BRAWLEY, Chief Medical Officer and Executive Vice President, American Cancer Society, Atlanta, GA MICHAEL A. CALIGIURI, Director, Ohio State Comprehensive Cancer Center, Columbus, and Past President, Association of American Cancer Institutes RENZO CANETTA, Vice President, Oncology Global Clinical Research, Bristol-Myers Squibb, Wallingford, CT MICHAELE CHAMBLEE CHRISTIAN, Retired, Washington, DC WILLIAM DALTON, CEO, M2Gen Personalized Medicine Institute, Moffitt Cancer Center, Tampa, FL, and Chair, American Association for Cancer Research Science Policy & Legislative Affairs Committee WENDY DEMARK-WAHNEFRIED, Associate Director for Cancer Prevention and Control, University of Alabama at Birmingham Comprehensive Cancer Center ROBERT ERWIN, President, Marti Nelson Cancer Foundation, Davis, CA ROY S. HERBST, Chief of Medical Oncology, Yale Cancer Center, New Haven, CT 1Institute of Medicine forums and roundtables do not issue, review, or approve indi- vidual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vi
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THOMAS J. KEAN, President and CEO, C-Change, Washington, DC DOUGLAS R. LOWY, Deputy Director, National Cancer Institute, Bethesda, MD DANIEL R. MASYS, Affiliate Professor, Biomedical Informatics, University of Washington, Seattle MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on Cancer, Durham, NC BRENDA NEVIDJON, Clinical Professor and Specialty Director, Nursing & Healthcare Leadership, Duke University School of Nursing, Durham, NC, and Past President, Oncology Nursing Society STEVEN PIANTADOSI, Director, Samuel Oschin Comprehensive Cancer Institute, Cedars-Sinai Medical Center, Los Angeles, CA LISA C. RICHARDSON, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA YA-CHEN TINA SHIH, Director, Program in the Economics of Cancer, University of Chicago, IL ELLEN SIGAL, Chairperson and Founder, Friends of Cancer Research, Washington, DC STEVEN STEIN, Senior Vice President, U.S. Clinical Development and Medical Affairs, Novartis Oncology, East Hanover, NJ JOHN A. WAGNER, Vice President, Clinical Pharmacology, Merck and Company, Inc., Rahway, NJ RALPH R. WEICHSELBAUM, Chair, Radiation and Cellular Oncology, and Director, Ludwig Center for Metastasis Research, University of Chicago Medical Center, IL JANET WOODCOCK, Director, Center for Drug Evaluation and Research, Food and Drug Administration, Rockville, MD National Cancer Policy Forum Staff SHARYL J. NASS, Director LAURA LEVIT, Program Officer ERIN BALOGH, Associate Program Officer PAMELA LIGHTER, Research Assistant MICHAEL PARK, Senior Program Assistant PATRICK BURKE, Financial Associate SHARON B. MURPHY, Scholar-in-Residence ROGER HERDMAN, Director, Board on Health Care Services 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 process. We wish to thank the following individuals for their review of this report: GWEN DARIEN, Director, The Pathways Project BRETT DAVIS, Senior Director, Strategy and Business Development, Oracle Health Sciences CHARLES FRIEDMAN, Director, Health Informatics Program, Professor, Department of Health Management and Policy, Professor, School of Information, University of Michigan MIA A. LEVY, Assistant Professor of Biomedical Informatics and Medicine, Vanderbilt University School of Medicine, Director, Cancer Clinical Informatics, Vanderbilt-Ingram Cancer Center ix
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x REVIEWERS Although these reviewers have provided many constructive comments and suggestions, they did not see the final draft of the report before its release. The review of this report was overseen by Melvin Worth. Appointed by the Institute of Medicine, he was 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 rapporteurs and the institution.
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Contents 1INTRODUCTION 1 Organization of the Workshop and Summary, 4 References, 5 2OVERVIEW OF THE CANCER INFORMATICS LANDSCAPE 7 Structured, Interoperable Research and Clinical Information Systems--Or the Lack Thereof, 8 Data Overload, 8 Databases That Foster Learning, 9 Making Connections, 9 Robust EHR Systems and Research Databases, 11 Cancer Center Informatics: Connecting with Patients, 12 Research Information Exchange, 13 Cancer Cooperative Group Informatics: Connecting Researchers, 15 Informatics Tools Used by the NCI Cooperative Group Program, 16 Opportunities for an Innovative Informatics Structure, 17 Clinical Translational Research Informatics: Connecting the Steps of the Research Process, 18 Hypothesis Driven Versus Hypothesis Generating, 19 Study Design, 19 xi
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xii CONTENTS Informatics Challenges for Translational Research, 20 Moving Clinical Translational Informatics Forward, 22 caBIG--The Vision and the Reality, 22 Looking Forward: A Three-Step Approach to Success in Informatics Innovation, 25 Community Participation in Moving Informatics Forward, 28 References, 29 3 INFORMATICS AND PERSONALIZED MEDICINE 31 An Integrative Systems Approach to Biology, Medicine, and Complexity, 32 Biology and Medicine as Informational Sciences, 33 Systems Biology Infrastructure, 34 Holistic Systems Experimental Approaches, 34 Emerging Technologies, 37 Domain-Driven,Transforming Analytic Tools, 39 Applications of Systems Medicine: The P4 Approach, 40 Information Technology for Health Care, 40 References, 42 4 INFORMATICS-SUPPORTED CANCER RESEARCH ENDEAVORS 43 Case Example: Dell-TGen Cloud Computing Collaboration in Personalized Medicine for Pediatric Neuroblastoma, 44 An N = 1 Approach to Clinical Research, 44 Molecularly Guided Individualized Cancer Therapy, 46 Opportunities in the Cloud, 47 Case Example: National Comprehensive Cancer Network Outcomes Database, 48 NCCN Guidelines, 48 NCCN Oncology Outcomes Database, 48 Case Example: IT Innovations for Community Cancer Practices, 51 System Design and Datasets, 53 Supporting Clinical Outcomes and Research, 54 Data Governance, 54 Case Example: Secondary Uses of Data for Comparative Effectiveness Research, 54 Secondary Use of Data, 56 Sustainability, 57
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CONTENTS xiii Cross-Cutting Issues, 58 Engaging Patients, 58 Building Trust: Privacy, Consent, and Ownership, 58 Data Granularity, 60 Secondary Use, 60 Engaging Private Practice and Extramural Researchers, 61 References, 61 5 POTENTIAL PATHWAYS AND MODELS FOR MOVING FORWARD 63 Public Data-Driven Systems and Personalized Medicine, 64 Commoditization of Data, 64 Integrative Genomics to Identify Novel Targets, 65 Genomic Nosology and Drug or Diagnostic Discovery, 66 Adapting to Data-Intensive, Data-Enabled Biomedicine, 67 Data Production, Analysis, and Utilization in Biomedicine, 67 Importance of Having the "Right" Data in the System, 69 Computational Capabilities for Large Datasets, 70 Moving from Silos to Systems, 72 Big Data and Disruptive Innovation: Models for Democratizing Cancer Research and Care, 73 Learning from Users of Big Data in Diverse Non-Health Venues, 74 Disruptive Innovation, 76 Democratizing Big Data Informatics for Cancer and Other Therapeutic Areas, 78 Consumers as Disruptive Innovators, 81 The EHR and Cancer Research and Care, 82 Enhancing Uptake of EHRs, 82 The EpicCare System as a Model for the Users of EHRs in Cancer Research and Care, 82 Cancer CenterBased Networks for Health Research Information Exchange, 84 Personalized Cancer Care, 84 Proposed Federated Data Model, 86 Other Models and Pathways, 86 Patients Helping Patients, 87 Providing a Substrate for Innovation, 87 Mining Data to Assess the Quality of Cancer Care, 88
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xiv CONTENTS Fostering Sharing, 88 Education, Training, and Funding, 89 If Data Are Available, Users Will Come, 89 References, 89 6 PROPOSAL FOR A COALITION OF ALL STAKEHOLDERS 91 Achieving Data Liquidity in the Cancer Community, 91 Principles, 92 Operational Strategy and Activities, 92 Coalition Governance, Funding, and Sustainability, 93 Working Toward a National System, 94 7 TRANSFORMING CANCER INFORMATICS: FROM SILOS TO SYSTEMS 95 A Framework For Action, 97 Changing Minds, Changing Behaviors, 97 ACRONYMS99 APPENDIXES A Workshop Agenda 103 B Speaker, Moderator, and Panelist Biographies 109
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Boxes, Figures, and Table BOXES 2-1 Dana-Farber Synergistic Patient and Research Knowledge Systems (SPARKS), 11 2-2 Common Needs to Catalyze Effectiveness in Cancer Research That Helped to Shape the Priority Areas for the caBIG Activities, 23 2-3 NCI Informatics Project Review Criteria, 26 3-1 P4 Medicine: Perspectives from Leroy Hood on What the Future Could Hold, 41 4-1 What Real-World Data Are Used by Whom?, 52 6-1 Proposed Coalition Principles, 93 FIGURES 2-1 Rapid-learning health care system for cancer care, 10 2-2 Dana-Farber Synergistic Patient and Research Knowledge Systems (SPARKS), 12 2-3 Example of a research information exchange system at the Moffitt Cancer Center, integrating data from multiple sources and providing them to diverse stakeholders, 14 xv
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xvi BOXES, FIGURES, AND TABLE 3-1 Systems biology infrastructure, 35 3-2 Systems medicine: A network of networks, 36 4-1 The evolution from evidence-based medicine to information- enabled medicine to intelligence-based medicine, 45 5-1 A new health care ecosystem arising from convergence of technologies and markets, 72 5-2 A new ecosystem of disruptive business models, 78 5-3 Learning health care paradigm supported by robust, interoperable informatics, 79 5-4 Designing a new federated research and health care network model, 84 7-1 Hypothetical framework highlighting key elements of an end-to- end cancer informatics system, 98 TABLE 4-1 The Evolving Evidence Perspective, 56