The National Cancer Policy Summit

OPPORTUNITIES AND CHALLENGES IN CANCER RESEARCH AND CARE

Meeting Summary by Margie Patlak, Sharyl J. Nass, and Erin Balogh

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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The National Cancer Policy Summit OPPORTUNITIES AND CHALLENGES IN CANCER RESEARCH AND CARE Meeting Summary by Margie Patlak, Sharyl J. Nass, and Erin Balogh 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 meeting 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. This study was also supported by the American Association for Cancer Research, American Cancer Society, the American Society of Clinical Oncology, the Association of American Cancer Institutes, C-Change, the CEO Roundtable on Cancer, Novartis Oncology, and the Oncology Nursing Society. 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: 978-0-309-18739-8 International Standard Book Number-10: 0-309-18739-7 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 2011 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). 2011. The National Cancer Policy Summit: Opportunities and Challenges in Cancer Research and Care. 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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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, Provost, Notre Dame University, South Bend, IN, and Past Chair, American Cancer Society Board of Directors MICHAEL A. CALIGIURI, Director, Ohio State Comprehensive Cancer Center, Columbus, OH RENZO CANETTA, Vice President, Oncology Global Clinical Research, Bristol-Myers Squibb, Wallingford, CT MICHAELE CHAMBLEE CHRISTIAN, Retired, Division of Cancer Treatment and Diagnosis, National Cancer Institute, Washington, DC WILLIAM DALTON, President, CEO, and Center Director, Moffitt Cancer Center, Tampa, FL, and Chair, AACR Committee on Science Policy and Legislative Affairs 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, University of California at Los Angeles (UCLA) Schools of Medicine & Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center, Los Angeles, CA 1 IOM forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published meeting summary rests with the rapporteurs and the institution. v

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ROY S. HERBST, Chief of Medical Oncology, Yale Cancer Center, New Haven, CT JOHN HOHNEKER, Senior Vice President and Head, Global Development, Integrated Hospital Care, Novartis Pharma AG, Basel Switzerland THOMAS J. KEAN, Executive Director, C-Change, Washington, DC DOUGLAS R. LOWY, Deputy Director, National Cancer Institute, Bethesda, MD JOHN MENDELSOHN, President, M.D. Anderson Cancer Center, Houston, TX 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 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 LISA C. RICHARDSON, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA JOHN A. WAGNER, Vice President, Clinical Pharmacology, Merck and Company, Inc., Rahway, NJ JANET WOODCOCK, Director, Center for Drug Evaluation and Research, Food and Drug Administration, Rockville, MD National Cancer Policy Forum Staff SHARYL NASS, Director, National Cancer Policy Forum LAURA LEVIT, Program Officer CHRISTINE MICHEEL, Program Officer ERIN BALOGH, Associate Program Officer MICHAEL PARK, Senior Program Assistant PATRICK BURKE, Financial Associate SHARON B. MURPHY, Scholar in Residence ROGER HERDMAN, Director, Board on Health Care Services vi

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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: Nancy Davenport-Ennis, Founder, Patient Advocacy Foundation, Hampton, VA Allen S. Lichter, Chief Executive Officer, American Society of Clinical Oncology, Alexandria, VA Barbara K. Rimer, Dean, Alumni Distinguished Professor, University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC Ellen V. Sigal, Chairperson and Founder, Friends of Cancer Research, Arlington, VA vii

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viii REVIEWERS Although the reviewers listed above 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 Enriqueta C. Bond, President Emeritus, Burroughs Wellcome Fund. Appointed by the Institute of Medicine, she 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 authors.

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Acknowledgments We would like to express our sincere gratitude to the following individuals for their input to the development of the National Cancer Policy Summit agenda: Harold Moses, Thomas G. Burish, Michaele Chamblee Christian, Betty R. Ferrell, Joseph F. Fraumeni, Jr., Thomas J. Kean, Sharon Murphy, Brenda Nevidjon, Lisa C. Richardson, and John A. Wagner. We also thank everyone who participated in the Summit for highlighting important issues in cancer research and cancer care, especially the panelists, who are listed in the agenda found in the appendix. ix

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Contents INTRODUCTION 1 RAPID LEARNING HEALTHCARE SYSTEMS 3 Interoperability, 4 Electronic Medical Records, 5 Validity of Data and Observational Studies, 6 Examples of Rapid Learning Healthcare Systems, 8 EVIDENCE-BASED MEDICINE 9 FINANCIALLY SUSTAINABLE MODELS OF CARE 11 Appropriate Incentives, 11 Appropriate Care, 14 Quality Standards, 15 Coordinated, Efficient Care, 16 Innovative Payment Schemes, 17 CANCER RISK REDUCTION 18 Prevention Areas, 20 Role of Public Health, 22 PATIENT-BASED RESEARCH AND CARE 24 Palliative Care and End-of-Life Care, 25 Caregiver Support, 28 Shared Decision Making, 29 Survivorship Care, 29 NCI STRUCTURE AND PROGRAMS 30 xi

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xii CONTENTS FDA REGULATION OF CANCER DRUGS AND DIAGNOSTICS 31 PRECOMPETITIVE COLLABORATION 34 GLOBALIZED HEALTH RESEARCH AND REGULATION 35 HEALTHCARE REFORM—AFFORDABLE CARE ACT 36 Essential Health Benefits, 37 Funding and Implementation, 37 Coverage Gaps, 41 CLOSING REMARKS 42 REFERENCES 42 APPENDIX: SUMMIT AGENDA 45 Boxes 1 The Cochrane Collaboration, 10 2 Affordable Care Act (ACA), 38