National Academies Press: OpenBook
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

DELIVERING
HIGH-QUALITY
CANCER CARE

Charting a New Course for a System in Crisis

Committee on Improving the Quality of Cancer Care:
Addressing the Challenges of an Aging Population

Board on Health Care Services

Laura A. Levit, Erin P. Balogh, Sharyl J. Nass, and
Patricia A. Ganz, Editors

INSTITUTE OF MEDICINE
            OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

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. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

This study was supported by Contract Nos. HHSN261200900003C and 200-2011-38807, TO #13 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 AARP; the American Cancer Society; the American College of Surgeons, Commission on Cancer; the American Society for Radiation Oncology; the American Society of Clinical Oncology; the American Society of Hematology; the California HealthCare Foundation; LIVESTRONG; the National Coalition for Cancer Survivorship; the Oncology Nursing Society; and Susan G. Komen for the Cure. 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: 978-0-309-28660-2

International Standard Book Number-10: 0-309-28660-3

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 2013 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.

Cover credit: Original oil painting, “Day 15 Hope,” reproduced by permission from Sally Loughridge, Rad Art: A Journey Through Radiation Treatment (Atlanta: American Cancer Society, 2012), 31.

Suggested citation: IOM (Institute of Medicine). 2013. Delivering high-quality cancer care: Charting a new course for a system in crisis. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

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

                                                —Goethe

image

INSTITUTE OF MEDICINE
            OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

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. C. D. Mote, Jr., 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. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

COMMITTEE ON IMPROVING THE QUALITY OF CANCER CARE:
ADDRESSING THE CHALLENGES OF AN AGING POPULATION

PATRICIA A. GANZ (Chair), Distinguished University Professor, University of California, Los Angeles, Schools of Medicine & Public Health, and Director, Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center

HARVEY JAY COHEN, Walter Kempner Professor of Medicine, and Director, Center for the Study of Aging and Human Development, Duke University Medical Center

TIMOTHY J. EBERLEIN, Bixby Professor and Chair, Department of Surgery, Washington University School of Medicine; Spencer T. and Ann W. Olin Distinguished Professor; and Director, Siteman Cancer Center at Barnes-Jewish Hospital, Washington University School of Medicine

THOMAS W. FEELEY, Helen Shafer Fly Distinguished Professor of Anesthesiology, Head, Institute for Cancer Care Innovation, and Head, Division of Anesthesiology and Critical Care, The University of Texas MD Anderson Cancer Center

BETTY R. FERRELL, Professor and Research Scientist, City of Hope National Medical Center

JAMES A. HAYMAN, Professor, Department of Radiation Oncology, University of Michigan

KATIE B. HORTON, Research Professor, George Washington University School of Public Health and Health Services, Department of Health Policy

ARTI HURRIA, Associate Professor, and Director, the Cancer and Aging Research Program, City of Hope National Medical Center

MARY S. McCABE, Director, Cancer Survivorship Program, Memorial Sloan-Kettering Cancer Center, and Lecturer, Division of Medical Ethics, Weill Medical College, Cornell University

MARY D. NAYLOR, Marian S. Ware Professor in Gerontology, and Director, New Courtland Center for Transitions and Health, University of Pennsylvania, School of Nursing

LARISSA NEKHLYU DOV, Associate Professor, Department of Population Medicine, Harvard Medical School, and Internist, Harvard Vanguard Medical Associates

MICHAEL N. NEUSS, Chief Medical Officer, and Professor, Department of Medicine, Vanderbilt-Ingram Cancer Center, Vanderbilt University Medical Center

NOMA L. ROBERSON, Cancer Research Scientist, Roswell Park Cancer Institute (Retired)

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

YA-CHEN TINA SHIH, Associate Professor, Section of Hospital Medicine, Department of Medicine, Pritzker School of Medicine and Director, the Economics of Cancer Program, The University of Chicago

GEORGE W. SLEDGE, JR., Chief of Oncology and Professor of Medicine, Stanford University School of Medicine

THOMAS J. SMITH, Director of Palliative Medicine and the Harry J. Duffey Family Professor of Palliative Medicine and Professor of Oncology, Johns Hopkins School of Medicine

NEIL S. WENGER, Professor, Division of General Internal Medicine and Health Services Research, University of California, Los Angeles, School of Medicine

Study Staff

LAURA LEVIT, Study Director

ERIN BALOGH, Associate Program Officer

PAMELA LIGHTER, Research Assistant

MICHAEL PARK, Senior Program Assistant

PATRICK BURKE, Financial Associate

SHARYL NASS, Director, National Cancer Policy Forum

ROGER HERDMAN, Director, Board on Health Care Services

Consultants

DANIEL MASYS, Affiliate Professor, Biomedical and Health Informatics, University of Washington

TRACY SPINKS, Project Director, The University of Texas MD Anderson Cancer Center

VICKIE WILLIAMS, Project Coordinator, Young Breast Cancer Survivorship Program, University of California, Los Angeles-LIVESTRONG Survivorship Center of Excellence, Jonsson Comprehensive Cancer Center

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

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:

ROBERT M. ARNOLD, University of Pittsburgh Medical Center

EDWARD J. BENZ, JR., Harvard Medical School and Dana-Farber Cancer Institute

AMY BERMAN, John A. Hartford Foundation

CATHY BRADLEY, Virginia Commonwealth University

DEBORAH BRUNER, Emory University

KAREN S. COOK, Stanford University

DEBRA GORDON, University of Washington School of Medicine

DEBRA J. HOLDEN, RTI International

J. RUSSELL HOVERMAN, The U.S. Oncology Network and Texas Oncology

CARLOS ROBERTO JAÉN, University of Texas Health Science Center at San Antonio

Page viii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

KENNETH W. KIZER, University of California, Davis, Health System

RUTH McCORKLE, Yale University School of Nursing

DIANE E. MEIER, Mount Sinai School of Medicine

LEE N. NEWCOMER, UnitedHealthcare

DAVID B. REUBEN, University of California, Los Angeles

LAWRENCE N. SHULMAN, Dana-Farber Cancer Institute

EDWARD H. WAGNER, Group Health Research Institute

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 HAROLD C. SOX, Dartmouth Institute for Health Policy and Clinical Practice, and PATRICIA FLATLEY BRENNAN, University of Wisconsin–Madison. Appointed by the National Research Council and Institute 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 institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

Acknowledgments

The committee and staff are indebted to a number of individuals and organizations for their contributions to this report. The following individuals conducted background research for the committee:

Lindsay Forbes, Intern, Institute of Medicine (Summer 2011)

Randy Gale, Fellow, Institute of Medicine (2010-2011)

Ana Hincapie, Mirzayan Science and Technology Fellow, Institute of Medicine (Winter 2012)

Cher Huang, Intern, MIT in Washington Program (Summer 2013)

Adam Schickedanz, Intern, Institute of Medicine (Summer 2012)

We extend thanks to Eric Slade and Eric Slade Productions for working with the committee to produce the dissemination video for this report. We also extend special thanks to the following individuals who were essential sources of information, generously giving their time and knowledge to further the committee’s efforts.

Peter Bach, Attending Physician, Memorial Sloan-Kettering Cancer Center

Dikla Benzeevi, 11-Year Metastatic Breast Cancer Survivor, Breast Cancer Patient Advocate

Amy Berman, Senior Program Officer, Hartford Foundation

Helen Burstin, Senior Vice President for Performance Measures, National Quality Forum

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

Eric Fennel, Senior Advisor of Policy and Programs, Center for Medicare and Medicaid Innovation

John Frenzel, Chief Medical Information Officer, University of Texas MD Anderson Cancer Center

Kristen McNiff, Director, Quality and Performance Measurement, American Society of Clinical Oncology

Mark Miller, Executive Director, Medicare Payment Advisory Commission

Stephen Palmer, Director, Office of e-Health Coordination, Texas Health and Human Services Commission

Maddie Peterson, Cancer Survivor

Willie C. Roberson, Clergyman/Pastor, Saint’s Home Church of God in Christ

Joesph V. Simone, President, Simone Consulting

Ron Walters, Associate Vice President of Medical Operations and Informatics, The University of Texas MD Anderson Cancer Center

Peter Yu, Chair, Health Information Technology Work Group, American Society of Clinical Oncology

In addition, we thank the individuals who spoke at the October 2012 National Cancer Policy Forum workshop Delivering Affordable Cancer Care in the 21st Century. Workshop presentations and discussions informed committee deliberations. Speakers included

Denise R. Aberle, Professor of Radiology and Bioengineering, David Geffen School of Medicine, University of California, Los Angeles

Amy P. Abernethy, Associate Professor, Duke University School of Medicine

Peter B. Bach, Attending Physician, Memorial Sloan-Kettering Cancer Center

Justin E. Bekelman, Assistant Professor of Radiation Oncology, Member, Abramson Cancer Center

Otis W. Brawley, Chief Medical Officer, American Cancer Society

Renzo Canetta, Vice President, Oncology Global Clinical Research, Bristol-Myers Squibb Company

Susan Dentzer, Editor-in-Chief, Health Affairs

Craig Earle, Medical Oncologist, Odette Cancer Centre

Peter D. Eisenberg, Medical Director, Marin Specialty Care

Ezekiel J. Emanuel, Diane v.S. Levy & Robert M. Levy University Professor, Perelman School of Medicine, University of Pennsylvania

Robert L. Erwin, President, Marti Nelson Cancer Foundation

Harvey V. Fineberg, President, Institute of Medicine

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

James S. Goodwin, George and Cynthia Mitchell Distinguished Chair in Geriatric Medicine, University of Texas Medical Branch

Robert J. Green, Medical Oncologist and Chief Medical Officer, Cancer Clinics of Excellence

Jessie Gruman, President, Center for Advancing Health

Jim C. Hu, Henry E. Singleton Chair in Urology, University of California, Los Angeles

Thomas J. Kean, President and Chief Executive Officer, C-Change

Barnett S. Kramer, Director, Division of Cancer Prevention, National Cancer Institute

Allen S. Lichter, Chief Executive Officer, American Society of Clinical Oncology

Mark B. McClellan, Senior Fellow, The Brookings Institution

John Mendelsohn, Co-Director, Khalifa Institute for Personalized Cancer Therapy, The University of Texas MD Anderson Cancer Center

Therese M. Mulvey, Physician-in-Chief, Southcoast Centers for Cancer Care

Lee N. Newcomer, Senior Vice President, Oncology UnitedHealthcare

Jeffrey Peppercorn, Associate Professor of Medicine, Duke University Medical Center

Scott Ramsey, Full Member, Cancer Prevention Program, Fred Hutchinson Cancer Research Center

Lowell E. Schnipper, Theodore W. & Evelyn G. Berenson Professor, Harvard Medical School

Joanne Schottinger, Clinical Lead, Cancer, Kaiser Permanente Care Management Institute

Deborah Schrag, Associate Professor of Medicine, Harvard Medical School

Veena Shankaran, Assistant Professor of Medical Oncology, University of Washington School of Medicine

Jennifer Temel, Associate Professor of Medicine, Harvard Medical School

Robin Yabroff, Epidemiologist, National Cancer Institute

Funding for this study was provided by AARP; the American Cancer Society; the American College of Surgeons, Commission on Cancer; the American Society for Radiation Oncology; the American Society of Clinical Oncology; the American Society of Hematology; the California HealthCare Foundation; Centers for Disease Control and Prevention; LIVESTRONG; the National Cancer Institute; the National Coalition for Cancer Survivorship; the Oncology Nursing Society; and Susan G. Komen for the Cure. The committee appreciates the opportunity and support extended by these sponsors for the development of this report.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

Finally, many within the Institute of Medicine were helpful to the study staff. We would like to thank Clyde Behney, Marton Cavani, Laura DeStefano, Chelsea Frakes, Jim Jensen, Jillian Laffrey, Tracy Lustig, Abbey Meltzer, Lauren Tobias, and Jennifer Walsh.

Page xiii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

Preface

A cancer diagnosis is one of the most feared events. Rarely diagnosed before the late 20th century, cancer now competes with cardiovascular disease as the leading cause of death in North America. With people living longer, the continued use of tobacco products, infectious diseases that transmit cancer-causing viruses and other pathogens, and an obesity epidemic, the cancer burden is projected to increase substantially in the United States over the coming decades. Almost 14 million people, more than 4 percent of the U.S. population, are cancer survivors; by 2012 this will grow to 18 million cancer survivors. Survivors have complex journeys, and even after completing cancer treatment, must engage in medical follow-up care to help manage the long-term and late effects of their treatments, and monitor the possibility of cancer recurrence or development of new secondary cancers.

For the 1.6 million people in the United States who join the ranks of newly diagnosed cancer patients each year, the cancer care system can be overwhelming. The complexity of the cancer care system is driven by the biology of cancer itself, the multiple specialists involved in the delivery of cancer care, as well as a health care system that is fragmented and often ill prepared to meet the individual needs, preferences, and values of patients who are anxious, symptomatic, and uncertain about where to obtain the correct diagnosis, prognosis, and treatment recommendations. Moreover, older individuals comprise the majority of people with cancer. Addressing the unique needs of an aging population of patients diagnosed with cancer, who are already experiencing comorbid conditions and loss of independence, is a critical challenge. We are not prepared to take care of this growing cancer patient population, as few of our standard treatment

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

approaches have been evaluated in this setting. Instead, we extrapolate from trial results and toxicities that emerge from treating younger and healthier patients with the same diagnoses. On top of this, the quality of cancer care varies tremendously.

As someone who has been an oncology practitioner for almost 40 years, I have seen dramatic changes in the treatment of cancer that have benefited my patients—greater precision in diagnosis, surgical treatments that are less radical and disfiguring, diagnoses of earlier stage disease as a result of screening, and more long-term disease-free survivors. However, the human and economic costs of these advances are enormous. Cancer patients often endure protracted periods of primary and adjuvant therapies, multimodal treatments with substantial toxicities and comorbidities, which may take years of physical and psychological recovery, with great financial hardship and social disruption. Palliative care and hospice services are underutilized and usually employed much later in the course of a patient’s cancer journey than recommended. Patients and their families often play the role of principal communicator as they visit one cancer treatment specialist after another, conveying the recommendations to subsequent consultants in a serial fashion. Coordination of complex cancer care, using a common electronic health record, with treating specialists who jointly discuss the patient’s case and then confer with the patient about their recommendations, is the exception and not the rule. Receipt of psychosocial support at the time of diagnosis and during treatment is also rare, as these “high-touch” services are seldom compensated through health insurance and are usually supported through ad hoc philanthropic funding rather than institutional or clinical practice resources.

We all want the best care for our family members and friends, but our current cancer care delivery system falls short in terms of consistency in the delivery of care that is patient centered, evidence based, and coordinated. We are at an inflection point in terms of repairing the cancer care delivery system. If we ignore the signs of crisis around us, we will be forced to deal with an increasingly chaotic and costly care system, with exacerbation of existing disparities in the quality of cancer care.

How can we change this situation? This report is the result of the thoughtful deliberations of our study committee, as well as the hard work of the Institute of Medicine (IOM) staff who supported our quest for the evidence behind the report’s ten recommendations. Those recommendations are based on a unifying conceptual framework for improving the quality of cancer care. This report also rests on the foundation of the transformative 1999 IOM report Ensuring Quality Cancer Care, which called for improvements in the technical quality of cancer care, the use of evidence-based guidelines to direct care, the use of electronic data capture and quality monitoring, as well as the assurance of access to cancer care for all, including high-quality end-of-life care. While that report generated

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

much attention in the oncology community, and drove some concerted action among oncology professional organizations and the federal government, a critical review of progress since the report’s recommendations were issued identified many continuing gaps and new challenges that could not have been anticipated. Sadly, the key recommendations regarding implementation of evidence-based care and quality monitoring have had limited uptake, and are needed even more today due to the expansion in cancer diagnostics, imaging, and therapeutics in the past decade, as well as the expected growth in the number of new cancer patients. The cost of cancer care is rising much faster than for other diseases, and there are few systematic efforts or incentives to eliminate waste and the use of ineffective therapies.

Facing this crisis, the committee’s vision for tackling these challenges and creating a high-quality cancer care delivery system is based on the IOM’s extensive work defining the quality of health care, with its patient-centered focus and emphasis on the needs, values, and preferences of patients, including advance care planning. Patient-centered care is at the core of a high-quality cancer care delivery system, as depicted by the study committee’s conceptual framework, and is something that is feasible in every clinical care setting, and can be supported by existing information technology if necessary (e.g., guidelines, evidence syntheses, pathways). Patient-clinician communication that focuses on information sharing about the diagnosis, prognosis, and treatment options, and that elicits the patient’s preferences for treatment is central to high-quality cancer care. Surrounding the patient and their family caregivers are members of a well-prepared cancer care delivery team that is able to ensure coordinated and comprehensive patient-centered care and close collaboration with other health care professionals not directly involved in cancer care delivery, such as geriatric specialists and primary care clinicians. Because evidence-based care is also at the heart of a high-quality cancer care delivery system, research must fill important gaps in our knowledge, especially pertaining to how best to treat older cancer patients and others who have multiple comorbid conditions in addition to cancer. Further, clinical trials and comparative effectiveness research must include data collection that reflects patient-reported outcomes, as well as information about other relevant patient characteristics and behaviors, to provide accurate information that will inform future patients about what they can expect to experience from recommended cancer treatments.

A high-quality and efficient information technology infrastructure is critical to collecting these outcome data from ongoing clinical practice at the point of care, along with specific information about the cancer, its treatment, and the clinical outcomes of treatments received over time. That data collection system, as depicted in the conceptual framework, will be at the center of a rapid learning health care system which will, in turn,

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

rely on regular assessments of the quality of care delivered in relationship to the costs of the associated care. Understanding how well we are doing with individual cancer patients, as well as groups of similar patients, could allow us to develop strategies for performance improvement and identify gaps in care that need our attention. Finally, in the high-quality cancer care delivery system of the future, payment models and financial incentives must focus on improving the affordability and quality of care for patients and payers. Eliminating disparities in access to high-quality cancer care for all members of our society remains a challenge; however, without relevant patient-centered information and quality measurement, we will not be able to create a more equitable system.

Although the committee’s conceptual framework may seem far removed from much current oncology practice, the committee believes that most elements of the framework are in place or are being developed. In many ways, oncology care is an extreme example of the best and worst in the health care system today—highly innovative targeted diagnostics and therapeutics alongside escalating costs that do not consistently relate to the clinical value of treatments, tremendous waste and inefficiencies due to poor coordination of care, and lack of adherence to evidence-based guidelines with frequent use of ineffective or inappropriate treatments.

In the setting of this crisis, there are many opportunities. If we can use this framework to successfully address the challenges to delivering high-quality oncology care, the same principles will be transferrable to other complex and chronic conditions that place continued demands on the health care system. In my closing years as an oncology professional, I dream of a cancer care delivery system that will ensure access to high-quality, patient-centered, evidence-based care, and that patients with cancer will have care teams supported by a system that enables them to provide compassionate and timely care.

It has been my privilege to serve as the chair of this study committee and to learn so much from the other committee members who worked extremely hard and collaboratively to refine the recommendations and evidence that we present in this report. As someone who was a reviewer of the 1999 IOM report, I feel that I have come full circle in helping to lead the efforts of this committee. I am sure that a decade from now, someone else will be reviewing these recommendations and they will either be commenting about how foolish we were or complimenting us on our vision and prescience. I hope the latter is the case and that this report will chart a new course for the cancer care delivery system that ensures high-quality, evidence-based care for all.

Patricia A. Ganz, Chair
Committee on Improving the Quality of Cancer Care:
Addressing the Challenges of an Aging Population

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

This page intentionally left blank.

Page xxii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

5-1   Types of Comparative Effectiveness Research Studies

5-2   Knowledge Contributed by Studies Conducted Under the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA)

6-1   A National Cancer Course Guidance Infrastructure

6-2   IOM Recommendations on the Foundational Elements of a Learning Health Care System

7-1   IOM Standards for Developing Trustworthy Clinical Practice Guidelines (CPGs)

8-1   Defining Value in Cancer Care

8-2   Medicare Prescription Drug, Improvement, and Moderization Act

8-3   ASCO’s “Top Five” List

8-4   The CMS Innovation Center

FIGURES

S-1   Domains of the cancer care continuum with examples of activities in each domain

S-2   An illustration of the committee’s conceptual framework for improving the quality of cancer care

1-1   Domains of the cancer care continuum with examples of activities in each domain

1-2   The majority of cancer diagnoses are in older adults

1-3   The majority of cancer deaths are in older adults

1-4   The majority of cancer survivors are older adults

1-5   An illustration of the committee’s conceptual framework for improving the quality of cancer care

2-1   Distribution of the projected older population by age in the United States, 2010 to 2050

2-2   Hispanics and non-Hispanics as a percentage of the U.S. population, 2000-2050

2-3   Projected cases of all invasive cancers in the United States by race and ethnicity

2-4   Age-specific incidence and mortality rates for all cancers combined, 2006-2010

2-5   Estimated and projected number of cancer survivors in the United States from 1977 to 2022 by year since diagnosis

Page xxiii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

3-1   Model of patient-centered care

3-2   People want to be involved in understanding evidence and making decisions about their care

3-3   Relationship of curative or life-prolonging treatment to palliative care for cancer

4-1   An illustration of a coordinated workforce

4-2   An illustration of a coordinated cancer care team, 176

TABLES

2-1   Projected U.S. Population, by Race: 2000-2050

2-2   Cancer Incidence Rates by Race, 2006-2010, from 18 SEER Geographic Areas

2-3   Estimated Number of U.S. Cancer Survivors by Sex and Age as of January 1, 2012

2-4   Death Rates by Race in 2006-2010 from 18 SEER Geographic Areas

2-5   Examples of Age-Related Changes in Each Organ of the Functional System

2-6   Examples of U.S. Governmental Organizations Involved in Improving Quality of Cancer Care

3-1   Important Functions of Patient-Clinician Communication

3-2   Examples of Web-Based Information, Resources, and Tools for Patients

3-3   Examples of Communication Strategies Clinicians Can Use to Present Complicated Information to Patients

3-4   Example of a Written Plan for Communication

3-5   Psychosocial Needs and Formal Services to Address Them

3-6   Examples of Hospice Care Models

6-1   Characteristics of a Learning Health Care System

6-2   Examples of Efforts to Develop Learning Health Care Systems

7-1   Examples of Quality Metrics Projects Relevant to Cancer Care

7-2   Types of Quality Metrics Used in Cancer Care

7-3   Examples of Organizations That Establish Clinical Practice Guidelines in Cancer

7-4   Examples of Performance Improvement Strategies

8-1   Examples of Payment Reform Models Relevant to Cancer Care

Page xxiv Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

This page intentionally left blank.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×

Acronyms

AACN

American Association of Colleges of Nursing

AAMC

Association of American Medical Colleges

ABIM

American Board of Internal Medicine

ACA

Patient Protection and Affordable Care Act

ACO

accountable care organization

ACoS

American College of Surgeons

ACOVE

Assessing Care of Vulnerable Elders

ACS

American Cancer Society

ADLs

activities of daily living

AHRQ

Agency for Healthcare Research and Quality

ALK

anaplastic lymphoma kinase

AML

acute myeloid leukemia

APRN

advanced practice registered nurse

ASCO

American Society for Clinical Oncology

ASP

average sales price

ASTRO

American Society for Radiation Oncology

AWP

average wholesale price

 
BPCA

Best Pharmaceuticals for Children Act

 
CBO

Congressional Budget Office

CDC

Centers for Disease Control and Prevention

CDRP

Cancer Disparities Research Partnership

CED

coverage with evidence development

CER

comparative effectiveness research

Page xxvi Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
CMOH

Consultants in Medical Oncology and Hematology

CMS

Centers for Medicare & Medicaid Services

CoC

Commission on Cancer

COI

conflict of interest

COME HOME

Community Oncology Medical Homes

CPG

clinical practice guideline

CPR

cardiopulmonary resuscitation

CRCHD

Center to Reduce Cancer Health Disparities

CT

computed tomography

CTCAE

Common Terminology Criteria for Adverse Events

 
DCPC

Division of Cancer Prevention and Control

DNP

doctorate of nursing practice

 
ECHO

Extension for Community Healthcare Outcomes

EGFR

epidermal growth factor receptor

EHB

essential health benefit

EHR

electronic health record

ER

estrogen receptor

 
FDA

Food and Drug Administration

FMAP

Federal Medical Assistance Percentages

FPL

federal poverty level

 
GAO

Government Accountability Office

GDG

guideline development group

GDP

gross domestic product

GME

graduate medical education

 
HER

human epidermal growth factor receptor-2

HHS

U.S. Department of Health and Human Services

HIPAA

Health Insurance Portability and Accountability Act

HITECH

Health Information Technology for Economic and Clinical Health

HRSA

Health Resources and Services Administration

 
IADLs

instrumental activities of daily living

IMRT

intensity-modulated radiotherapy

IOM

Institute of Medicine

IRB

institutional review board

IT

information technology

Page xxvii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
MAP

Measures Applications Partnership

MB-CCOP

Minority-Based Community Clinical Oncology Programs

MedPAC

Medicare Payment Advisory Commission

MMA

Medicare Prescription Drug, Improvement, and Modernization Act

 
NCCN

National Comprehensive Cancer Network

NCCS

National Coalition for Cancer Survivorship

NCDB

National Cancer Data Base

NCI

National Cancer Institute

NCPF

National Cancer Policy Forum

NCTN

National Clinical Trials Network

NIA

National Institute on Aging

NIH

National Institutes of Health

NPP

National Priorities Partnership

NQF

National Quality Forum

NQMC

National Quality Measures Clearinghouse

NSQIP

National Surgical Quality Performance Improvement Program

 
ONC

Office of the National Coordinator for Health Information Technology

 
PA

physician assistant

PACT

Planning Actively for Cancer Treatment [Act of 2013]

PCMH

patient-centered medical home

PCORI

Patient-Centered Outcomes Research Institute

PCPI

Physician Consortium for Performance Improvement

PET

positron emission tomography

PPS

prospective payment system

PREA

Pediatric Research Equity Act

PRO

patient-reported outcome

PROMIS

Patient-Reported Outcome Measurement Information System

 
QOPI

Quality Oncology Practice Initiative

 
RCT

randomized controlled trial

RN

registered nurse

Page xxviii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
SEER

Surveillance, Epidemiology, and End Results

SES

socioeconomic status

SR

systematic review

 
USPSTF

U.S. Preventive Services Task Force

 
VA

U.S. Department of Veterans Affairs

VBID

value-based insurance design

VBP

value-based purchasing

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R1
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R2
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R3
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R4
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R5
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R6
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R7
Page viii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R8
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R9
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R10
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R11
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R12
Page xiii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R13
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R14
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R15
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R16
Page xvii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R17
Page xviii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R18
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R19
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R20
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R21
Page xxii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R22
Page xxiii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R23
Page xxiv Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R24
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R25
Page xxvi Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R26
Page xxvii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R27
Page xxviii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. doi: 10.17226/18359.
×
Page R28
Next: Summary »
Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis Get This Book
×
Buy Paperback | $66.00 Buy Ebook | $54.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

In the United States, approximately 14 million people have had cancer and more than 1.6 million new cases are diagnosed each year. However, more than a decade after the Institute of Medicine (IOM) first studied the quality of cancer care, the barriers to achieving excellent care for all cancer patients remain daunting. Care often is not patient-centered, many patients do not receive palliative care to manage their symptoms and side effects from treatment, and decisions about care often are not based on the latest scientific evidence. The cost of cancer care also is rising faster than many sectors of medicine--having increased to $125 billion in 2010 from $72 billion in 2004--and is projected to reach $173 billion by 2020. Rising costs are making cancer care less affordable for patients and their families and are creating disparities in patients' access to high-quality cancer care. There also are growing shortages of health professionals skilled in providing cancer care, and the number of adults age 65 and older--the group most susceptible to cancer--is expected to double by 2030, contributing to a 45 percent increase in the number of people developing cancer. The current care delivery system is poorly prepared to address the care needs of this population, which are complex due to altered physiology, functional and cognitive impairment, multiple coexisting diseases, increased side effects from treatment, and greater need for social support.

Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis presents a conceptual framework for improving the quality of cancer care. This study proposes improvements to six interconnected components of care: (1) engaged patients; (2) an adequately staffed, trained, and coordinated workforce; (3) evidence-based care; (4) learning health care information technology (IT); (5) translation of evidence into clinical practice, quality measurement and performance improvement; and (6) accessible and affordable care. This report recommends changes across the board in these areas to improve the quality of care.

Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis provides information for cancer care teams, patients and their families, researchers, quality metrics developers, and payers, as well as HHS, other federal agencies, and industry to reevaluate their current roles and responsibilities in cancer care and work together to develop a higher quality care delivery system. By working toward this shared goal, the cancer care community can improve the quality of life and outcomes for people facing a cancer diagnosis.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!