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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;
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For more information about the Institute of Medicine, visit the IOM home page at:
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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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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
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achievements of engineers. Dr. Charles M. Vest is president of the National Academy
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The Institute of Medicine was established in 1970 by the National Academy of Sciences
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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
