Assessing and Advancing Progress in the Delivery of High-Quality Cancer Care: Proceedings of a Workshop (2024)

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Assessing and Advancing Progress in the Delivery of High-Quality Cancer Care Co-hosted by the American Society of Clinical Oncology and the National Cancer Policy Forum Erin Balogh, Theresa Wizemann, and Sharyl Nass, Rapporteurs National Cancer Policy Forum Board on Health Care Services Health and Medicine Division Proceedings of a Workshop PREPUBLICATION COPY—Uncorrected Proofs 

NATIONAL ACADEMIES PRESS 500 Fifth Street, NW, Washington, DC 20001 This activity was supported by Contract No. 75D30121D11240 (Task Order Nos. 75D30121F00002 and 75D30123F00024) and Contract No. HHSN263 201800029I (Task Order Nos. HHSN26300008 and 75N98023F00019) with the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health, respectively, and by the American Association for Cancer Research; American Cancer Society; American College of Radiology; American Society of Clinical Oncology; Association of American Cancer Institutes; Association of Community Cancer Centers; Flatiron Health; Merck & Co., Inc.; National Comprehensive Cancer Network; National Patient Advocate Foundation; Novartis Oncology; Oncology Nursing Society; Partners in Health; and Pfizer Inc. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/27779 This publication is 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. Copyright 2024 by the National Academy of Sciences. National Academies of Sciences, Engineering, and Medicine and National Academies Press and the graphical logos for each are all trademarks of the National Academies of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Assessing and advancing progress in the delivery of high-quality cancer care: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/27779. PREPUBLICATION COPY—Uncorrected Proofs 

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

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PLANNING COMMITTEE1 PATRICIA GANZ (Chair), University of California, Los Angeles JUSTIN BEKELMAN, University of Pennsylvania NARJUST FLOREZ, Dana-Farber Cancer Institute CHRISTOPHER R. FRIESE, University of Michigan CAROLYN HENDRICKS, Maryland Oncology Hematology HEDVIG HRICAK, Memorial Sloan Kettering Cancer Center LARISSA NEKHLYUDOV, Brigham and Women’s Hospital and Dana- Farber Cancer Institute LAUREL PRACHT, West Valley Ovarian Cancer Alliance NATHAN PENNELL, Cleveland Clinic CARDINALE SMITH, Mount Sinai Health System ISHWARIA SUBBIAH, Sarah Cannon Research Institute ROBIN YABROFF, American Cancer Society Project Staff ANNA ADLER, Senior Program Assistant ( from September 2023) LORI BENJAMIN BRENIG, Research Associate (until May 2023) TORRIE BROWN, Program Coordinator CHIDINMA CHUKWURAH, Senior Program Assistant (until April 2024) EMMA WICKLAND, Research Associate ( from September 2023) JULIE WILTSHIRE, Senior Finance Business Partner JENNIFER ZHU, Associate Program Officer ( from January 2023) ERIN BALOGH, Co-Director, National Cancer Policy Forum (until June 2024) LAURENE GRAIG, Senior Program Officer ( June–July 2024) FRANCIS AMANKWAH, Co-Director, National Cancer Policy Forum ( from July 2024) SHARYL NASS, Co-Director, National Cancer Policy Forum; Senior Director, Board on Health Care Services 1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution. v PREPUBLICATION COPY—Uncorrected Proofs 

NATIONAL CANCER POLICY FORUM2 ROBERT A. WINN (Chair), Virginia Commonwealth University JUSTIN E. BEKELMAN, University of Pennsylvania SMITA BHATIA, The University of Alabama at Birmingham GIDEON BLUMENTHAL, Merck CHRIS BOSHOFF, Pfizer Inc. OTIS W. BRAWLEY, Johns Hopkins University CHRISTINA CHAPMAN, Baylor College of Medicine; Michael E. DeBakey VA Medical Center GWEN DARIEN, National Patient Advocate Foundation CRYSTAL DENLINGER, National Comprehensive Cancer Network JAMES H. DOROSHOW, National Cancer Institute S. GAIL ECKHARDT, Baylor College of Medicine CHRISTOPHER R. FRIESE, University of Michigan STANTON L. GERSON, Case Western Reserve University SCARLETT LIN GOMEZ, University of California, San Francisco JULIE R. GRALOW, American Society of Clinical Oncology ROY S. HERBST, Yale University; American Association for Cancer Research HEDVIG HRICAK, Memorial Sloan Kettering Cancer Center CHANITA HUGHES-HALBERT, University of Southern California ROY A. JENSEN, University of Kansas; Association of American Cancer Institutes RANDY A. JONES, University of Virginia BETH Y. KARLAN, University of California, Los Angeles SAMIR N. KHLEIF, Georgetown University; Society for Immunotherapy of Cancer SCOTT M. LIPPMAN, University of California, San Diego ELENA MARTINEZ, University of California, San Diego LARISSA NEKHLYUDOV, Brigham and Women’s Hospital; Dana-Farber Cancer Institute; Harvard Medical School RANDALL A. OYER, University of Pennsylvania; Penn Medicine Lancaster General Health; Association of Community Cancer Centers CLEO A. RYALS, Flatiron Health RICHARD L. SCHILSKY, ASCO TAPUR Study; University of Chicago JULIE SCHNEIDER, Oncology Center of Excellence, U.S. Food and Drug Administration 2 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution. vi PREPUBLICATION COPY—Uncorrected Proofs 

SUSAN M. SCHNEIDER, Duke University LAWRENCE N. SHULMAN, University of Pennsylvania HEIDI SMITH, Novartis Pharmaceuticals KATRINA TRIVERS, Centers for Disease Control and Prevention ROBIN YABROFF, American Cancer Society Forum Staff ANNA ADLER, Senior Program Assistant TORRIE BROWN, Program Coordinator EMMA WICKLAND, Research Associate JULIE WILTSHIRE, Senior Finance Business Partner JENNIFER ZHU, Associate Program Officer ERIN BALOGH, Co-Director, National Cancer Policy Forum (until June 2024) LAURENE GRAIG, Senior Program Officer ( June–July 2024) FRANCIS AMANKWAH, Co-Director, National Cancer Policy Forum ( from July 2024) SHARYL NASS, Co-Director, National Cancer Policy Forum; Senior Director, Board on Health Care Services vii PREPUBLICATION COPY—Uncorrected Proofs 

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Reviewers This Proceedings of a Workshop 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 each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this report: HEIDI KLEPIN, Wake Forest University School of Medicine NANCY KEATING, Harvard Medical School JULIA ROWLAND, Smith Center for Healing and the Arts YA-CHEN TINA SHIH, UCLA David Geffen School of Medicine Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommenda- tions of this report nor did they see the final draft before its release. The review of this proceedings was overseen by BETTY FERRELL, City of Hope. She was responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. ix PREPUBLICATION COPY—Uncorrected Proofs 

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Acknowledgments The National Cancer Policy Forum is grateful for the support of our many annual sponsors. Federal sponsors include the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health. Nonfederal sponsors include the American Association for Cancer Research; American Cancer Society; American College of Radiology; American Society of Clinical Oncology; Association of American Cancer Institutes; Association of Community Cancer Centers; Flatiron Health; Merck & Co., Inc.; National Com- prehensive Cancer Network; National Patient Advocate Foundation; Novartis Oncology; Oncology Nursing Society; Partners in Health; and Pfizer Inc. The forum wishes to express its gratitude to the expert speakers whose presentations and discussions identified opportunities to advance progress in the delivery of high-quality cancer care. The forum also wishes to thank the members of the planning committee for their work in developing an excellent workshop agenda. xi PREPUBLICATION COPY—Uncorrected Proofs 

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Contents Acronyms and Abbreviations xvii Proceedings of a Workshop 1 WORKSHOP OVERVIEW 1 PROGRESS SINCE THE 2013 IOM REPORT 8 Overview of the 2013 Report Recommendations and Implementation Progress 8 Changes in the Landscape of Oncology Care Since 2013 10 Perspectives on Progress 13 ADVANCING THE CONTINUUM OF PATIENT-CENTERED CANCER CARE 18 The Changing Face of Cancer: Progress and Emerging Trends 20 Patient and Community Engagement 22 Developing the Infrastructure for Sustainable Models of Cancer Care Delivery 24 Delivering Equitable, High-Quality Cancer Care in the Veterans Health Administration 26 Delivering Psychosocial Care to Cancer Survivors 27 Sustainable Rural Cancer Care Models 28 WORKFORCE CONSIDERATIONS: REACHING FOR THE QUADRUPLE AIM 29 Multidisciplinary, Multispecialty Workforce from Diagnosis Onward 29 xiii PREPUBLICATION COPY—Uncorrected Proofs 

xiv CONTENTS Oncology Workforce Trends 30 Taking a Systematic Approach to Oncology Workforce Wellness 32 Promoting and Sustaining Diversity in the Oncology Workforce 33 Continuing Education and Training 34 Opportunities to Leverage Digital Health to Improve System Efficiencies and Care 35 Improving Patient-Centered Care and Clinician Well-Being 36 Securing Funding and Leadership Support Needed for Improving Care 37 Embracing De-implementation 37 EVOLVING CANCER CARE DELIVERY 37 Developing a Learning Health System to Transform Care and Health Equity 38 Value-Based Payment and the Delivery of High-Quality and Equitable Cancer Care 39 Health Insurer Perspective on Cancer Care Delivery Transformation 41 Cancer Care Delivery in Community Practice 42 Primary Care and Specialty Care Integration 44 Assessing Payment Models 44 The Role of Clinical Trials in Cancer Care 45 EVIDENCE GENERATION TO INFORM ONCOLOGY CARE 46 Perspectives on Progress in Evidence Generation Since 2013 46 Health Disparities in Cancer Research and Patient Access to Cancer Care 49 Advancing Equitable Implementation of Evidence-Based Oncology Care 51 Data Generation and Sharing 54 REFLECTIONS 57 REFERENCES 60 APPENDIXES A STATEMENT OF TASK 69 B WORKSHOP AGENDA 71 PREPUBLICATION COPY—Uncorrected Proofs 

Boxes and Figures BOXES 1 Observations on the Delivery of High-Quality Cancer Care: Highlights of Points Made by Individual Workshop Participants, 3 2 Suggestions from Individual Workshop Participants to Advance Progress in the Delivery of High-Quality Cancer Care, 6 3 Patient Voices: Lived Experiences, 19 4 Tools and Guidance Supporting the Use of PROs Since the 2013 IOM Report, 58 FIGURES 1 Conceptual framework for a high-quality cancer care delivery system, 9 2 Applying implementation science to oncology care, 53 xv PREPUBLICATION COPY—Uncorrected Proofs 

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Acronyms and Abbreviations ACA Affordable Care Act ACCC Association of Community Cancer Centers AI artificial intelligence ARPA-H Advanced Research Projects Agency for Health ASCO American Society of Clinical Oncology CDC Centers for Disease Control and Prevention CMS Centers for Medicare & Medicaid Services EGFR epidermal growth factor receptor EHR electronic health record EOM Enhancing Oncology Model (CMS) FDA U.S. Food and Drug Administration HHS U.S. Department of Health and Human Services HIPAA Health Insurance Portability and Accountability Act IOM Institute of Medicine IT information technology mCODE Minimal Common Oncology Data Elements xvii PREPUBLICATION COPY—Uncorrected Proofs 

xviii ACRONYMS AND ABBREVIATIONS NCI National Cancer Institute NPAF National Patient Advocate Foundation OCE Oncology Center of Excellence (FDA) OCM Oncology Care Model (CMS) PRO patient-reported outcome VHA Veterans Health Administration PREPUBLICATION COPY—Uncorrected Proofs