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

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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 THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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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 Gov- erning Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engi- neering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for ap- propriate 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 ex- pressed 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 can- cer care: Charting a new course for a system in crisis. 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 mandate that requires it to advise the federal govern- ment 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 en- gineers. 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 engi- neering programs aimed at meeting national needs, encourages education and re- search, 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 pro- viding 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

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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 NEKHLYUDOV, 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) v

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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 vi

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Reviewers T his 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 Re- port 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 respon- siveness 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 vii

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viii REVIEWERS 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 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 HAROLD C. SOX, Dartmouth Institute for Health Policy and Clinical Practice, and PATRICIA FLATLEY BRENNAN, University of Wisconsin–Madison. Ap- pointed 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 com- mittee and the institution.

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Acknowledgments T he 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 work- ing 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 knowl- edge 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 ix

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x ACKNOWLEDGMENTS 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

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ACKNOWLEDGMENTS xi 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 Can- cer 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.

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xviii CONTENTS 3 PATIENT-CENTERED COMMUNICATION AND SHARED DECISION MAKING 91 Defining Patient-Centered Communication and Shared Decision Making, 92 The Importance of Patient-Centered Communication and Shared Decision Making in Cancer, 97 Challenges to Patient-Centered Communication and Shared Decision Making in Cancer, 98 Improving Patient-Centered Communication and Shared Decision Making in Cancer, 105 Improving Patient-Centered Communication and Shared Decision Making at the End of Life, 129 Summary and Recommendations, 137 References, 139 4 THE WORKFORCE CARING FOR PATIENTS WITH CANCER 153 Defining the Workforce Caring for Patients with Cancer, 155 Ensuring the Quantity and Quality of the Workforce, 168 Caregivers, 183 Summary and Recommendations, 187 References, 189 Annex 4-1 Professionals Involved in Cancer Care, 202 5 THE EVIDENCE BASE FOR HIGH-QUALITY CANCER CARE 207 How the Evidence Base for Cancer Care Decisions Is Generated, 209 Improving the Breadth of Information Collected, 213 Improving the Depth of Information Collected, 222 Improving the Use of Information Technology, 225 Summary and Recommendations, 227 References, 228 6  LEARNING HEALTH CARE INFORMATION A TECHNOLOGY SYSTEM FOR CANCER 235 The Vision, 238 Challenges, 253 Path to Implementation, 257 Summary and Recommendations, 261 References, 262

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CONTENTS xix 7 TRANSLATING EVIDENCE INTO PRACTICE, MEASURING QUALITY, AND IMPROVING PERFORMANCE 271 Cancer Quality Metrics, 272 Clinical Practice Guidelines, 293 Performance Improvement Initiatives, 298 Summary and Recommendations, 300 References, 302 8 ACCESSIBLE AND AFFORDABLE CANCER CARE 309 Accessible Cancer Care, 310 Affordable Cancer Care, 316 Summary and Recommendations, 338 References, 340 Annex 8-1 Examples of Ongoing Activities Designed to  Improve Access to Care for Vulnerable and Underserved Populations, 351 APPENDIXES A Glossary 357 B Committee Member and Staff Biographies 371

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Boxes, Figures, and Tables BOXES S-1 The Crisis in Cancer Care Delivery, 2 S-2 Goals of the Recommendations, 7 1-1 The Crisis in Cancer Care Delivery, 20 1-2 Examples of Progress to Date in Implementing the Institute of Medicine’s 1999 Recommendations, 22 1-3 Charge to the Committee on Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population, 27 2-1 Domains of a Geriatric Assessment, 57 3-1 Questions That Patients with Cancer Can Discuss with Their Clinicians, 100 3-2 Examples of Decision Support Programs, 112 3-3 Information in a Cancer Care Plan, 120 3-4 Challenges to the Delivery of Palliative Care Across the Cancer Care Continuum, 123 4-1 The Roles of Primary Care Clinicians in Caring for Patients with Cancer, 159 4-2 Principles of Team-Based Health Care, 172 4-3 Examples of Team-Based Cancer Care, 174 4-4 Examples of Interprofessional Educational Programs, 178 xxi

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xxii BOXES, FIGURES, AND TABLES 5-1 Types of Comparative Effectiveness Research Studies, 212 5-2 Knowledge Contributed by Studies Conducted Under the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA), 218 6-1 A National Cancer Course Guidance Infrastructure, 246 6-2 IOM Recommendations on the Foundational Elements of a Learning Health Care System, 258 7-1 IOM Standards for Developing Trustworthy Clinical Practice Guidelines (CPGs), 295 8-1 Defining Value in Cancer Care, 318 8-2 Medicare Prescription Drug, Improvement, and Moderization Act, 320 8-3 ASCO’s “Top Five” List, 324 8-4 The CMS Innovation Center, 328 FIGURES S-1 Domains of the cancer care continuum with examples of activities in each domain, 4 S-2  illustration of the committee’s conceptual framework for An improving the quality of cancer care, 1-1 Domains of the cancer care continuum with examples of activities in each domain, 29 1-2 The majority of cancer diagnoses are in older adults, 30 1-3 The majority of cancer deaths are in older adults, 31 1-4 The majority of cancer survivors are older adults, 31 1-5  illustration of the committee’s conceptual framework for An improving the quality of cancer care, 36 2-1 Distribution of the projected older population by age in the United States, 2010 to 2050, 44 2-2 Hispanics and non-Hispanics as a percentage of the U.S. population, 2000-2050, 47 2-3 Projected cases of all invasive cancers in the United States by race and ethnicity, 48 2-4 Age-specific incidence and mortality rates for all cancers combined, 2006-2010, 50 2-5 Estimated and projected number of cancer survivors in the United States from 1977 to 2022 by year since diagnosis, 52

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BOXES, FIGURES, AND TABLES xxiii 3-1 Model of patient-centered care, 94 3-2 People want to be involved in understanding evidence and making decisions about their care, 96 3-3 Relationship of curative or life-prolonging treatment to palliative care for cancer, 124 4-1 An illustration of a coordinated workforce, 176 4-2 An illustration of a coordinated cancer care team, 176 TABLES 2-1 Projected U.S. Population, by Race: 2000-2050, 46 2-2 Cancer Incidence Rates by Race, 2006-2010, from 18 SEER Geographic Areas, 49 2-3 Estimated Number of U.S. Cancer Survivors by Sex and Age as of January 1, 2012, 51 2-4 Death Rates by Race in 2006-2010 from 18 SEER Geographic Areas, 53 2-5 Examples of Age-Related Changes in Each Organ of the Functional System, 60 2-6 Examples of U.S. Governmental Organizations Involved in Improving Quality of Cancer Care, 70 3-1 Important Functions of Patient-Clinician Communication, 95 3-2 Examples of Web-Based Information, Resources, and Tools for Patients, 106 3-3 Examples of Communication Strategies Clinicians Can Use to Present Complicated Information to Patients, 118 3-4 Example of a Written Plan for Communication, 122 3-5 Psychosocial Needs and Formal Services to Address Them, 126 3-6 Examples of Hospice Care Models, 136 6-1 Characteristics of a Learning Health Care System, 239 6-2 Examples of Efforts to Develop Learning Health Care Systems, 242 7-1 Examples of Quality Metrics Projects Relevant to Cancer Care, 274 7-2 Types of Quality Metrics Used in Cancer Care, 279 7-3 Examples of Organizations That Establish Clinical Practice Guidelines in Cancer, 294 7-4 Examples of Performance Improvement Strategies, 299 8-1 Examples of Payment Reform Models Relevant to Cancer Care, 329

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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 xxv

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xxvi ACRONYMS 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

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ACRONYMS xxvii 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

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xxviii ACRONYMS 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