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Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
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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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
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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.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
×

“Knowing is not enough; we must apply.
Willing is not enough; we must do.”

Goethe

image

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
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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.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
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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

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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.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
×

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

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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.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
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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

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Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
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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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
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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.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Informatics Needs and Challenges in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13425.
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Informatics Needs and Challenges in Cancer Research: Workshop Summary Get This Book
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As information technology becomes an integral part of health care, it is important to collect and analyze data in a way that makes the information understandable and useful. Informatics tools--which help collect, organize, and analyze data--are essential to biomedical and health research and development. The field of cancer research is facing an overwhelming deluge of data, heightening the national urgency to find solutions to support and sustain the cancer informatics ecosystem. There is a particular need to integrate research and clinical data to facilitate personalized medicine approaches to cancer prevention and treatment--for example, tailoring treatment based on an individual patient's genetic makeup as well as that of the tumor --and to allow for more rapid learning from patient experiences.

To further examine informatics needs and challenges for 21st century biomedical research, the IOM's National Cancer Policy Forum held a workshop February 27-28, 2012. The workshop was designed to raise awareness of the critical and urgent importance of the challenges, gaps and opportunities in informatics; to frame the issues surrounding the development of an integrated system of cancer informatics for acceleration of research; and to discuss solutions for transformation of the cancer informatics enterprise. Informatics Needs and Challenges in Cancer Research: Workshop Summary summarizes the workshop.

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