A Path to Transformation
Michael M. E. Johns, Guru Madhavan,
Francis K. Amankwah, and Sharyl J. Nass, 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
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This activity was supported by grants from the American Cancer Society, the Centers for Disease Control and Prevention, and the National Cancer Institute of the National Institutes of Health. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization that provided support for the project.
International Standard Book Number-13: 978-0-309-49231-7
International Standard Book Number-10: 0-309-49231-9
Digital Object Identifier: https://doi.org/10.17226/25438
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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.
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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
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.
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
MICHELE McCORKLE, University of Pittsburgh
ROBERT POOL, Editorial Consultant
BRENDAN SALONER, Johns Hopkins Bloomberg School of Public Health
This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. 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 integrity of the deliberative process.
We thank the following individuals for their review of this report:
Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions 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 comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the National Academies.
Both my brother and my sister are cancer survivors, and I was my brother’s bone marrow donor. Years of experience as a cancer surgeon 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 extend beyond the clinical setting, reaching into families, homes, and communities 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 cancer” 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 individuals 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 expected 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 cancer control that currently exists in the United States has developed over time not under the direction of some master plan but rather piecemeal as
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. Comprehensive cancer centers came into being. Federal agencies invested in research and introduced regulations. Companies developed many lifesaving 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 various 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 network 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 generating 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 patients 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 accountable 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
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 assessment 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 diagnosis, and various treatments. This report begins with and builds on these but necessarily promulgates a wider conception of cancer control, starting from basic risk awareness through end of life, involving a range of participants broader than usually considered, and finally presents a national 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 continued 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 technologies 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 improvements in their specific areas of interest, but in today’s world it is vitally 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
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 also 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