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OCR for page R1
Patient-Centered Cancer Treatment Planning
Improving the Quality of Oncology Care
WORKSHOP SUMMARY
A National Coalition for Cancer Survivorship and
Institute of Medicine Workshop
Margie Patlak, Erin Balogh, and Sharyl J. Nass, Rapporteurs
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 project was supported by the National Coalition for Cancer Survivorship. The
National Cancer Policy Forum is 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, respec-
tively. In addition, the National Cancer Policy Forum is also 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. 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: 978-0-309-21273-1
International Standard Book Number-10: 0-309-21273-1
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. Patient-Centered Cancer Treat-
ment Planning: Improving the Quality of Oncology Care: Workshop Summary. Washington,
DC: The National Academies Press.
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“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
— Goethe
Advising the Nation. Improving Health.
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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
BETTY R. FERRELL (Co-chair), Research Scientist, City of Hope National
Medical Center, Duarte, California
ELLEN STOVALL (Co-chair), Senior Health Policy Advisor, National
Coalition for Cancer Survivorship, Silver Spring, Maryland
ANTHONY L. BACK, Professor of Medicine, University of Washington,
and Director, Program in Cancer Communication, Seattle Cancer
Care Alliance and Fred Hutchinson Cancer Research Center, Seattle,
Washington
WILLIAM DALTON, President, Chief Executive Officer (CEO), and
Center Director, Moffitt Cancer Center, Tampa, Florida, and Chair,
AACR Committee on Science Policy and Legislative Affairs
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, California
ELIZABETH GOSS, Partner, Turner & Goss LLP, Washington, DC
JENNIFER HAUSMAN, Clinical Research Manager, Public Health Policy,
WellPoint, Inc., Woodland Hills, California
ANDREA KABCENELL, Vice President, Institute for Healthcare
Improvement, Ithaca, New York
SHARON B. MURPHY, Scholar in Residence, Institute of Medicine,
Washington, D.C.
ALISON P. SMITH, Vice President, Strategic Initiatives, C-Change,
Washington, D.C.
THOMAS J. SMITH, Professor of Medicine and Palliative Care Research,
Virginia Commonwealth University Massey Cancer Center, Richmond,
Virginia
Project Staff
ERIN BALOGH, Study Director
MICHAEL PARK, Senior Program Assistant
SHARYL J. NASS, Director, National Cancer Policy Forum
ROGER HERDMAN, Director, Board on Health Care Services
1 The Institute of Medicine planning committee was solely responsible for organizing
the meeting, identifying topics, and choosing speakers. The responsibility for the published
summary rests with the rapporteurs and the institution.
v
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NATIONAL CANCER POLICY FORUM1
JOHN MENDELSOHN (Chair), President, M.D. Anderson Cancer Center,
Houston, Texas
PATRICIA A. GANZ (Vice chair), Professor, University of California at
Los Angeles (UCLA) School of Medicine & Public Health, Division of
Cancer Prevention & Control Research, Jonsson Comprehensive Cancer
Center, Los Angeles, California
AMY ABERNETHY, Associate Professor of Medicine, Duke University
School of Medicine, and Director, Duke Cancer Care Research Program,
Durham, North Carolina
FRED APPELBAUM, Director, Clinical Research Division, Fred
Hutchinson Cancer Research Center, Seattle, Washington
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,
Massachusetts
MONICA BERTAGNOLLI, Professor of Surgery, Harvard University
Medical School, Boston, Massachusetts
THOMAS G. BURISH, Provost, Notre Dame University, South Bend,
Indiana, and Past Chair, American Cancer Society Board of Directors
MICHAEL A. CALIGIURI, Director, Ohio State Comprehensive Cancer
Center, Columbus, Ohio, and President, Association of American
Cancer Institutes
RENZO CANETTA, Vice President, Oncology Global Clinical Research,
Bristol-Myers Squibb, Wallingford, Connecticut
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, Florida, and Chair, AACR Committee on Science Policy
and Legislative Affairs
WENDY DEMARK-WAHNEFRIED, Associate Director for Cancer
Prevention and Control, University of Alabama at Birmingham
Comprehensive Cancer Center, Birmingham, Alabama
ROBERT ERWIN, President, Marti Nelson Cancer Foundation, Davis,
California
1 Institute of Medicine forums and roundtables do not issue, review, or approve indi-
vidual documents. The responsibility for the published meeting summary rests with the
rapporteurs and the institution.
vi
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ROY S. HERBST, Chief of Medical Oncology, Yale Cancer Center, New
Haven, Connecticut
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, Maryland
DANIEL R. MASYS, Professor and Chair, Department of Biomedical
Informatics, Vanderbilt University School of Medicine, Memphis,
Tennessee
MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on
Cancer, Durham, North Carolina
BRENDA NEVIDJON, Clinical Professor and Specialty Director, Nursing
& Healthcare Leadership, Duke University School of Nursing, Durham,
North Carolina, and Past President, Oncology Nursing Society
STEVEN PIANTADOSI, Director, Samuel Oschin Comprehensive Cancer
Institute, Cedars-Sinai Medical Center, Los Angeles, California
LISA C. RICHARDSON, Associate Director for Science, Division of
Cancer Prevention and Control, Centers for Disease Control and
Prevention, Atlanta, Georgia
YA-CHEN TINA SHIH, Director, Program in the Economics of Cancer,
University of Chicago, Chicago, Illinois
ELLEN SIGAL, Chairperson and Founder, Friends of Cancer Research,
Washington, DC
JOHN A. WAGNER, Vice President, Clinical Pharmacology, Merck and
Company, Inc., Rahway, New Jersey
RALPH R. WEICHSELBAUM, Chair, Radiation and Cellular Oncology,
and Director, Ludwig Center for Metastasis Research, The University of
Chicago Medical Center, Chicago, Illinois
JANET WOODCOCK, Director, Center for Drug Evaluation and Research,
Food and Drug Administration, Rockville, Maryland
National Cancer Policy Forum Staff
SHARYL J. 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
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 deliberative process. We wish to thank the following
individuals for their review of this report:
Nancy Jo Bush, Oncology Clinical Nurse Specialist, Oncology Nurse
Practitioner, Lecturer, and Assistant Clinical Professor, UCLA
School of Nursing, Los Angeles, California
Robert L. Erwin, President, Marti Nelson Cancer Foundation, Davis,
California
Sherrie Kaplan, Assistant Vice Chancellor of Healthcare, Professor
of Medicine, and Executive Co-Director, Health Policy Research,
University of California at Irvine
Lawrence N. Shulman, Chief Medical Officer, Senior Vice President
for Medical Affairs, and Chief, Division of General Oncology,
Dana-Farber Cancer Institute, Boston, Massachusetts
ix
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x REVIEWERS
Although the reviewers listed above have provided many construc-
tive comments and suggestions, they did not see the final draft of the
report before its release. The review of this report was overseen by Ruth
McCorkle, Florence Schorske Wald Professor of Nursing and Co-Director
of Dissemination Core, Center for Self and Family Management of Vul-
nerable Populations, Yale School of Nursing. 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 institu-
tional procedures and that all review comments were carefully considered.
Responsibility for the final content of this report rests entirely with the
authoring committee and the institution.
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Contents
INTRODUCTION AND OVERVIEW, 1
WHY PATIENT-CENTERED PLANNING FOR CANCER?, 3
PATIENT-CENTERED CANCER CARE, 5
Patient Education, 6
Patient Empowerment, 7
Communication, 8
Communication with Patients with Advanced Cancer, 11
Coordination, 15
Addressing Mental Health Issues, 16
Patient-Centered Cancer Treatment Plan, 17
PATIENT-CENTERED CANCER TREATMENT PLANNING IN
PRACTICE: ARE WE THERE YET?, 21
Patient Education, 22
Shared Decision Making, 23
CHALLENGES TO PATIENT-CENTERED CARE, 24
Patient Stress, 25
Lack of Health Literacy and Numeracy, 26
Differing Opinions, 27
Systemic Challenges, 28
TOOLS, PERSONNEL, AND PROGRAMS TO OVERCOME
BARRIERS, 29
Tools and Resources, 29
xi
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xii CONTENTS
Training, 34
Personnel, 35
Patient Navigators, 35
Oncology Nurses and Social Workers, 40
Model Programs, 41
Patient Coaching, 41
Decision Support, 41
Accountable Care, 42
Direct-to-Consumer Services, 44
Registries, 45
Survivorship Planning as a Model for Treatment Planning, 46
POLICY OPTIONS TO PROMOTE PATIENT-CENTERED
CANCER TREATMENT PLANNING, 48
Standards for Training, Licensure, and Practice, 48
Financial Incentives, 49
Research, 50
Healthcare Reform, 51
FINAL REMARKS, 53
REFERENCES, 53
APPENDIX, 59
BOXES AND FIGURES
Box 1: Advanced Care Planning, 12
Box 2: Role of the Primary Care Physician in Cancer Treatment
Planning, 18
Box 3: Electronic Medical Records, 32
Figure 1: Model of psychosocial care, 20
Figure 2: The roles of patient navigators, 37
Figure 3: The model of quality cancer care developed by
Dr. Ed Wagner, 52
