National Academies Press: OpenBook
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Guiding Cancer Control: A Path to Transformation. Washington, DC: The National Academies Press. doi: 10.17226/25438.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Guiding Cancer Control: A Path to Transformation. Washington, DC: The National Academies Press. doi: 10.17226/25438.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Guiding Cancer Control: A Path to Transformation. Washington, DC: The National Academies Press. doi: 10.17226/25438.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

GUIDING CANCER CONTROL A Path to Transformation Michael M. E. Johns, Guru Madhavan, Sharyl J. Nass, and Francis K. Amankwah, Editors Committee on a National Strategy for Cancer Control in the United States Board on Health Care Services Health and Medicine Division A Consensus Study Report of PREPUBLICATION COPY—Uncorrected Proofs

THE NATIONAL ACADEMIES PRESS   500 Fifth Street, NW  Washington, DC 20001 This activity was supported by grants from the American Cancer Society, Centers for Disease Control and Prevention, and the National Cancer Institute of the National Institutes of Health. Any opinions, findings, conclusions, or recommen- dations expressed in this publication do not necessarily reflect the views of any organization that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25438 Library of Congress Control Number: Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; www.nap.edu. Copyright 2019 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2019. Guiding cancer control: A path to transformation. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/25438. PREPUBLICATION COPY—Uncorrected Proofs

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY—Uncorrected Proofs

COMMITTEE ON A NATIONAL STRATEGY FOR CANCER CONTROL IN THE UNITED STATES MICHAEL M. E. JOHNS (Chair), Chancellor Emeritus and Professor of Medicine and Public Health, Emory University; President and Chief Executive Officer Emeritus, Emory Healthcare KATRINA ARMSTRONG, Jackson Professor of Clinical Medicine, Harvard Medical School; Chair, Department of Medicine, and Physician-in-Chief, Massachusetts General Hospital SMITA BHATIA, Gay and Bew White Endowed Chair in Pediatric Oncology; Director, Institute for Cancer Outcomes and Survivorship; University of Alabama School of Medicine BETTY FERRELL, Director and Professor, Division of Nursing Research and Education, City of Hope National Medical Center JONATHAN FIELDING, Distinguished Professor of Health Policy and Management and Pediatrics, University of California, Los Angeles; Former Los Angeles County Director of Public Health BEVERLY ASHLEIGH GUADAGNOLO, Professor of Radiation Oncology and Health Services Research; Section Chief, Sarcoma/ Melanoma Radiation Oncology; Associate Director of Physicians Referral Service, The University of Texas MD Anderson Cancer Center JOSEPH LIPSCOMB, Georgia Cancer Coalition Distinguished Cancer Scholar and Professor of Health Policy and Management, Emory University MARÍA ELENA MARTÍNEZ, Sam M. Walton Endowed Chair for Cancer Research and Professor of Family and Preventive Medicine, University of California, San Diego MARY McCABE, Consultant in Cancer Survivorship, and Former Clinical Director, Cancer Survivorship Center, Memorial Sloan Kettering Cancer Center LEAH MERCHANT, Section Supervisor, Montana Cancer Control Programs, Montana Department of Public Health and Human Services JEWEL MULLEN, Associate Dean for Health Equity and Associate Professor of Population Health and Internal Medicine, The University of Texas at Austin Dell Medical School ELECTRA PASKETT, Marion N. Rowley Professor of Cancer Research, The Ohio State University GEORGE POSTE, Regents’ Professor and Del E. Webb Chair of Health Innovation, and Director and Chief Scientist, Complex Adaptive Systems Initiative, Arizona State University v PREPUBLICATION COPY—Uncorrected Proofs

WILLIAM ROUSE, Alexander Crombie Humphreys Chair and Director, Center for Complex Systems and Enterprises, Stevens Institute of Technology WILLIAM STEAD, Chief Strategy Officer, Vanderbilt University Medical Center; McKesson Foundation Professor of Biomedical Informatics and Professor of Medicine, Vanderbilt University CORNELIA ULRICH, Executive Director, Comprehensive Cancer Center, Huntsman Cancer Institute; Jon and Karen Huntsman Presidential Professor in Cancer Research, The University of Utah NOTE: See Appendix C for Disclosure of Unavoidable Conflict of Interest. Staff GURU MADHAVAN (Study Director), Senior Program Officer, Health and Medicine Division (through February 2019); Director of Programs, National Academy of Engineering (from February 2019) FRANCIS AMANKWAH, Associate Program Officer ANNALEE GONZALES, Senior Program Assistant SHARYL NASS, Director, Board on Health Care Services and National Cancer Policy Forum Consultants MICHELE McCORKLE, University of Pittsburgh ROBERT POOL, Editorial Consultant BRENDAN SALONER, Johns Hopkins Bloomberg School of Public Health vi PREPUBLICATION COPY—Uncorrected Proofs

Reviewers T his Consensus Study Report was reviewed in draft form by indi- viduals chosen for their diverse perspectives and technical exper- tise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine 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 integ- rity of the deliberative process. We thank the following individuals for their review of this report: NORMAN R. AUGUSTINE, formerly Lockheed Martin Corporation LOUIS P. GARRISON, University of Washington and formerly ISPOR JEFFREY P. KOPLAN, Emory University TRACY A. LIEU, Kaiser Permanente HAMILTON MOSES III, Alerion Advisors, LLC; formerly Boston Consulting Group; and formerly Johns Hopkins Hospital JOHN E. NIEDERHUBER, University of Virginia and Johns Hopkins University NEELA PATEL, Seattle Genetics ELIZABETH A. PLATZ, Johns Hopkins Bloomberg School of Public Health vii PREPUBLICATION COPY—Uncorrected Proofs

viii REVIEWERS HOLLY G. PRIGERSON, Weill Cornell Medicine RINO RAPPUOLI, GSK Vaccines (Italy) BARBARA K. RIMER, University of North Carolina Gillings School of Global Public Health LEWIS G. SANDY, UnitedHealth Group PATTI MIGLIORE SANTIAGO, Washington State Department of Health JAY J. SCHNITZER, MITRE Corporation LEE SCHWARTZBERG, West Cancer Center and University of Tennessee Although the reviewers listed above have provided many construc- tive comments and suggestions, they were not asked to endorse the con- clusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by DAVID R. CHALLONER, University of Florida, and ALFRED O. BERG, University of Washington School of Medicine. They were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review com- ments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the National Academies. PREPUBLICATION COPY—Uncorrected Proofs

Preface B oth my brother and my sister are cancer survivors, and I was my brother’s bone marrow donor. Years of experience as a cancer sur- geon and later as an administrator and chief executive officer of a hospital have given me extensive experience with cancer’s medical toll, but this personal experience has shown me how the claws of cancer ex- tend beyond the clinical setting, reaching into families, homes, and com- munities and taking far too much from far too many. Thus, it is doubly frustrating to me that our country—and, indeed, the world—has not made more progress against cancer than it should have. Nearly half a century ago, the United States declared a “war on can- cer” with the passage of the National Cancer Act of 1971. Even so, over the next 12 months in the United States alone, more than 1.7 million in- dividuals will hear the devastating words, “You have cancer,” and some 606,000 people will die from the disease—nearly twice as many as in 1971. We have seen encouraging outcomes on several fronts, of course. For example, death rates from specific cancers have been steadily declining over the past 25 years, and fewer people are being diagnosed with certain cancers, such as lung and colorectal cancers. Still, with nearly 17 million cancer survivors in the United States today—and significant increases ex- pected in the years to come—it is time to rethink our practice and systems of cancer control. That rethinking needs to begin with a clear understanding of the status quo and the interests that prevail around it. The “system” of can- cer control that currently exists in the United States has developed over time not under the direction of some master plan but rather piecemeal as ix PREPUBLICATION COPY—Uncorrected Proofs

x PREFACE the result of thousands of participants and their decisions. A clinician or hospital chose to get involved with cancer treatment. Oncology became a specialty of medicine, and further subspecialization occurred. Com- prehensive cancer centers came into being. Federal agencies invested in research and introduced regulations. Companies developed many lifesav- ing products. Public health organizations started antismoking campaigns. State governments developed numerous cancer plans. Advocacy groups formed and worked for research funding, public awareness, or policy actions. Over time, the various entities and organizations developed vari- ous relationships among themselves. Today, cancer control in the United States is carried out by an extremely complicated, interconnected network of independent agents pursuing their own agendas and, when necessary or convenient, coordinating with some of the other agents in the net- work but otherwise having no hierarchical command structure or central decision-making body. Cancer control is, to use the principal term and guiding concept of this report, a complex adaptive system. As has been true for decades, scientific and medical research is gener- ating a steady stream of tools and insights for our cancer control arsenal. But today we have the opportunity to do something transformative for cancer control: leverage converging technologies and capabilities for the cancer control system to be more responsive to policy choices and be much more efficient and accountable overall. This change in our vision and approach is a crucial necessity given the large and growing cancer burden in the United States—a burden that currently comes to about $600 billion annually in terms of medical and related expenditures, as well as lost productivity, and could well approach $1 trillion in the coming years, not including social and other difficult-to-quantify costs. Indeed, many previous analyses and reports, including those from many of the groups I have been privileged to be part of, have starkly yet commonly concluded either that we have a “crisis” or that the situation, in which pa- tients struggle to find ways to pay for cancer control, is “unsustainable.” A starting point challenge is also the fact that the participants involved in cancer control operate in a multipayer universe without a single ac- countable authority and with different standards for acceptable evidence. Progress is both much needed and desired. This report, Guiding Cancer Control: A Path to Transformation, starts with the complexity of cancers and cancer control and then works toward motivating an approach that seeks to better understand, develop, and improve both our current and our planned efforts. This will require a robust integration of resources, efforts, and talents, an idea that is hardly novel—presidents from Franklin Delano Roosevelt to Richard Nixon and beyond have been committed to “conquering” cancer—but one that is still PREPUBLICATION COPY—Uncorrected Proofs

PREFACE xi pressingly important. Cancers and cancer control efforts arouse financial and emotional energies across society, but going forward many of our strategies must necessarily be different. Much of the work underlying this report began with a basic assess- ment of the following questions: Have we really made progress with cancer control? Are we asking and addressing the right questions? What needs to be done differently and better? How do we get all the people in the cancer control enterprise to communicate with one another, as well as collaborate? At the outset of this study, these seemed like vague questions, but they sharply guided the vision for what “control” means or should mean. Historically, control has meant an emphasis on prevention, early diagno- sis, and various treatments. This report begins with and builds on these but necessarily promulgates a wider conception of cancer control, start- ing from basic risk awareness through end of life, involving a range of participants broader than usually considered, and finally presents a na- tional strategic vision for cancer control based on the scientific principles, engineering tools, and business and policy realities of complex adaptive systems. A novel contribution of this report, we believe, is in recognizing and documenting the variety of participants (especially within the U.S. federal government) focused on cancer control. This points to the con- tinued need for integrated resources and activities across these agencies and other participants for which the report recommends the methods of systems engineering to achieve a greater degree of coordination in cancer control efforts. Many committed and hard-working people involved in cancer control are responsible for the progress we have achieved. There are countless people alive today who owe a great debt to their efforts and the technolo- gies they have developed and applied. Yet, ultimately, cancer prevails and continues to take a major toll on human life and suffering after 50 years of the “war on cancer.” A driving reason could be that well-intentioned stakeholders in different fields have worked independently to make im- provements in their specific areas of interest, but in today’s world it is vi- tally essential—perhaps even a prerequisite—to understand and practice cancer control as a complex adaptive system and to develop strategies accordingly. In the future, decisions about cancer control ideally will be made after taking into account how changes will affect the entire system and not just one aspect of it, and this report offers specific suggestions for developing an approach to making such decisions. The stakes now seem higher. The coming decades will see a sharp aging of the U.S. population and increases in costs associated with cancer control that could overwhelm the nation. The best bet for avoiding such PREPUBLICATION COPY—Uncorrected Proofs

xii PREFACE a scenario is to approach cancers and cancer control as complex adaptive systems to transform our approaches, increase our accountability, and make best use of the talents and resources at our disposal. In doing so, not only can we improve the overall productivity of the nation and the lives of countless families—like mine—but we can set a precedent to control other diseases. — Michael M. E. Johns, Chair Committee on a National Strategy for Cancer Control in the United States PREPUBLICATION COPY—Uncorrected Proofs

Contents SUMMARY 1 1 COMPLEXITY: FROM CELLS TO SOCIETY 11 Scope of Cancer Control, 12 Cancer Burden and Disparities, 15 Difficult Trade-Offs, 19 The Complexity of Cancers and Cancer Control, 22 The “Continuum” of Cancer Control, 24 Social Costs and Consequences, 33 Complex Adaptive Systems, 43 Findings, 50 References, 52 2 THE CURRENT “SYSTEM” OF CANCER CONTROL 63 Global Efforts in Cancer Control, 64 Federal Efforts in the United States, 67 State and Local Initiatives, 72 Performance Evaluation, 75 A Vigorous System of Participants and Interests, 77 Consumer and Other Technology Firms in Cancer Control, 79 Historically Common Themes, 84 Public Trust in Cancer Control, 86 Toward a Consolidated Vision, 89 Findings, 90 References, 92 xiii PREPUBLICATION COPY—Uncorrected Proofs

xiv CONTENTS 3 GUIDING THE SYSTEM OF CANCER CONTROL 101 Systems Engineering in Society, 102 Systems Approaches in Cancer Control, 105 Systems Analyses and Systematic Trade-Offs, 110 Building a Multi-Level Model, 117 Guidance Systems for Cancer Control, 121 Findings, 124 References, 125 4 A PATH TO TRANSFORMATION 127 Conclusions, 128 Recommendations, 131 Applying the Guidance System, 135 From Many to One: Advancing the Practice, 137 Building New Capabilities and Competencies, 142 Working for Success, 143 Setting a Precedent, 145 APPENDIXES A STAKEHOLDER INPUT 147 B BIOGRAPHICAL INFORMATION 149 C DISCLOSURE OF UNAVOIDABLE CONFLICT OF 159 INTEREST PREPUBLICATION COPY—Uncorrected Proofs

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Throughout history, perhaps no other disease has generated the level of social, scientific, and political discourse or has had the degree of cultural significance as cancer. A collective in the truest sense of the word, "cancer" is a clustering of different diseases that afflict individuals in different ways. Its burdens are equally broad and diverse, from the physical, financial, and psychological tolls it imposes on individuals to the costs it inflicts upon the nation’s clinical care and public health systems, and despite decades of concerted efforts often referred to as the "war on cancer", those costs have only continued to grow over time. The causes and effects of cancer are complex—in part preventable and treatable, but also in part unknown, and perhaps even unknowable.

Guiding Cancer Control defines the key principles, attributes, methods, and tools needed to achieve the goal of implementing an effective national cancer control plan. This report describes the current structure of cancer control from a local to global scale, identifies necessary goals for the system, and formulates the path towards integrated disease control systems and a cancer-free future. This framework is a crucial step in establishing an effective, efficient, and accountable system for controlling cancer and other diseases.

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