Informatics Needs and Challenges in Cancer Research: Workshop Summary (2012)
Chapter: Front Matter
INFORMATICS
NEEDS AND CHALLENGES
IN CANCER RESEARCH
Workshop Summary
Sharyl J. Nass and Theresa Wizemann, Rapporteurs
National Cancer Policy Forum
Board on Health Care Services
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu
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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.
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Suggested citation: IOM (Institute of Medicine). 2012. Informatics needs and challenges in cancer research: Workshop summary. Washington, DC: The National Academies Press.
“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
—Goethe
Advising the Nation. Improving Health.
THE NATIONAL ACADEMIES
Advisers to the Nation on Science, Engineering and Medicine
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 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 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.
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.
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 Hutchinson 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 individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.
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
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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
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.
Contents
Organization of the Workshop and Summary
2 OVERVIEW OF THE CANCER INFORMATICS LANDSCAPE
Structured, Interoperable Research and Clinical Information Systems—Or the Lack Thereof
Databases That Foster Learning
Robust EHR Systems and Research Databases
Cancer Center Informatics: Connecting with Patients
Cancer Cooperative Group Informatics: Connecting Researchers
Informatics Tools Used by the NCI Cooperative Group Program
Opportunities for an Innovative Informatics Structure
Clinical Translational Research Informatics: Connecting the Steps of the Research Process
Informatics Challenges for Translational Research
Moving Clinical Translational Informatics Forward
caBIG—The Vision and the Reality
Looking Forward: A Three-Step Approach to Success in Informatics Innovation
Community Participation in Moving Informatics Forward
3 INFORMATICS AND PERSONALIZED MEDICINE
An Integrative Systems Approach to Biology, Medicine, and Complexity
Biology and Medicine as Informational Sciences
Systems Biology Infrastructure
Holistic Systems Experimental Approaches
Domain-Driven,Transforming Analytic Tools
Applications of Systems Medicine: The P4 Approach
Information Technology for Health Care
4 INFORMATICS-SUPPORTED CANCER RESEARCH ENDEAVORS
An N = 1 Approach to Clinical Research
Molecularly Guided Individualized Cancer Therapy
Case Example: National Comprehensive Cancer Network Outcomes Database
NCCN Oncology Outcomes Database
Case Example: IT Innovations for Community Cancer Practices
Supporting Clinical Outcomes and Research
Case Example: Secondary Uses of Data for Comparative Effectiveness Research
Building Trust: Privacy, Consent, and Ownership
Engaging Private Practice and Extramural Researchers
5 POTENTIAL PATHWAYS AND MODELS FOR MOVING FORWARD
Public Data-Driven Systems and Personalized Medicine
Integrative Genomics to Identify Novel Targets
Genomic Nosology and Drug or Diagnostic Discovery
Adapting to Data-Intensive, Data-Enabled Biomedicine
Data Production, Analysis, and Utilization in Biomedicine
Importance of Having the “Right” Data in the System
Computational Capabilities for Large Datasets
Big Data and Disruptive Innovation: Models for Democratizing Cancer Research and Care
Learning from Users of Big Data in Diverse Non-Health Venues
Democratizing Big Data Informatics for Cancer and Other Therapeutic Areas
Consumers as Disruptive Innovators
The EHR and Cancer Research and Care
The EpicCare System as a Model for the Users of EHRs in Cancer Research and Care
Cancer Center–Based Networks for Health Research Information Exchange
Education, Training, and Funding
If Data Are Available, Users Will Come
6 PROPOSAL FOR A COALITION OF ALL STAKEHOLDERS
Achieving Data Liquidity in the Cancer Community
Operational Strategy and Activities
Coalition Governance, Funding, and Sustainability
Working Toward a National System
7 TRANSFORMING CANCER INFORMATICS: FROM SILOS TO SYSTEMS
Boxes, Figures, and Table
BOXES
2-1 Dana-Farber Synergistic Patient and Research Knowledge Systems (SPARKS)
2-3 NCI Informatics Project Review Criteria
3-1 P4 Medicine: Perspectives from Leroy Hood on What the Future Could Hold
4-1 What Real-World Data Are Used by Whom?
6-1 Proposed Coalition Principles
FIGURES
2-1 Rapid-learning health care system for cancer care
2-2 Dana-Farber Synergistic Patient and Research Knowledge Systems (SPARKS)
3-1 Systems biology infrastructure
3-2 Systems medicine: A network of networks
5-1 A new health care ecosystem arising from convergence of technologies and markets
5-2 A new ecosystem of disruptive business models
5-3 Learning health care paradigm supported by robust, interoperable informatics
5-4 Designing a new federated research and health care network model
7-1 Hypothetical framework highlighting key elements of an end-to-end cancer informatics system
TABLE
