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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy and Communication Strategies in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25664.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy and Communication Strategies in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25664.
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Health Literacy and Communication Strategies in Oncology Emily Zevon, Erin Balogh, Joe Alper, and Sharyl Nass, Rapporteurs National Cancer Policy Forum Roundtable on Health Literacy Board on Health Care Services Health and Medicine Division PREPUBLICATION COPY—Uncorrected Proofs

THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 This activity was supported by Contract No. 200-2011-38807 (Task Order No. 75D30118F00071) and Contract No. HHSN263201800029I (Task Order No. HHSN26300008) with the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health, respectively, and by the Ameri- can 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, Bristol-Myers Squibb, Can- cer Support Community, CEO Roundtable on Cancer, Flatiron Health, Helsinn Therapeutics (U.S.), Inc., Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Pfizer Inc. Any opinions, findings, conclu- sions, 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/10.17226/25664 Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2020 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2020. Health literacy and communication strategies in oncology: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/25664. 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 technol- ogy. 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 Sci- ences, Engineering, and Medicine to provide independent, objective anal- ysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs

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

WORKSHOP PLANNING COMMITTEE1 KAREN BASEN-ENGQUIST (Co-Chair), Annie Laurie Howard Research Distinguished Professor, Professor of Behavioral Science, and Director, Center for Energy Balance in Cancer Prevention and Survivorship, University of Texas MD Anderson Cancer Center MICHAEL PAASCHE-ORLOW (Co-Chair), Professor of Medicine, Boston University School of Medicine GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Research Center, and Affiliate Professor, Department of Biostatistics, University of Washington EDWARD J. BENZ, President and Chief Executive Officer, Emeritus, Dana- Farber Cancer Institute, and the Richard and Susan Smith Distinguished Professor of Medicine, Genetics and Pediatrics, Harvard Medical School NICOLE F. DOWLING, Associate Director for Science, Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention CHRISTINE GUNN, Assistant Professor of Medicine, Boston University School of Medicine LORI HOFFMAN HŌGG, Veterans Health Administration National Program Manager for Prevention Policy, National Center for Health Promotion and Disease Prevention, and National Oncology Clinical Advisor, Office of Nursing Services, Department of Veterans Affairs LINDA HOUSE, President, Cancer Support Community ASHLEY HOUSTEN, Assistant Professor, Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine in St. Louis BETH KARLAN, Professor and Vice Chair, Women’s Health Research, Department of Obstetrics and Gynecology, David Geffen School of Medicine, and Director of Cancer Population Genetics, Jonsson Comprehensive Cancer Center, University of California, Los Angeles LISA KENNEDY SHELDON, Chief Clinical Officer, Oncology Nursing Society CATHY MEADE, Senior Member, Division of Population Science, Health Outcomes, and Behavior, Moffitt Cancer Center 1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speak- ers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution. v PREPUBLICATION COPY—Uncorrected Proofs

RANDALL A. OYER, Medical Director, Oncology, Ann B. Barshinger Cancer Institute, Penn Medicine Lancaster General Health ROBERT A. WINN, Professor of Medicine, Division of Pulmonary, Critical Care, Sleep, and Allergy, University of Illinois at Chicago, and Associate Vice Chancellor, Community-Based Practice, and Director, University of Illinois Cancer Center, University of Illinois Hospital and Health Sciences System ROBIN YABROFF, Senior Scientific Director, Health Services Research, American Cancer Society Project Staff ERIN BALOGH, Senior Program Officer RUTH COOPER, Senior Program Assistant (until November 2019) ANNALEE GONZALES, Administrative Assistant KATHERINE HAWTHORNE, Senior Program Assistant (from October 2019) NATALIE LUBIN, Research Assistant (until September 2019) EMILY ZEVON, Associate Program Officer MELISSA FRENCH, Director, Roundtable on Health Literacy, Board on Population Health and Public Health Practice SHARYL NASS, Director, National Cancer Policy Forum, and Director, Board on Health Care Services Consultant JOE ALPER, Writer vi PREPUBLICATION COPY—Uncorrected Proofs

NATIONAL CANCER POLICY FORUM1 EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer Emeritus, Dana-Farber Cancer Institute, and the Richard and Susan Smith Distinguished Professor of Medicine, Genetics and Pediatrics, Harvard Medical School GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Research Center, and Affiliate Professor, Department of Biostatistics, University of Washington KENNETH ANDERSON, Kraft Family Professor of Medicine, American Cancer Society, and Clinical Research Director, Jerome Lipper Multiple Myeloma Center, Harvard Medical School, Dana-Farber Cancer Institute WILLIAM L. BAILEY, Vice President, Medical & Scientific Affairs Research & Development, Helsinn Therapeutics (U.S.), Inc. KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Professor of Behavioral Science, and Director, Center for Energy Balance in Cancer Prevention and Survivorship, University of Texas MD Anderson Cancer Center CHRIS BOSHOFF, Global Development Officer, Oncology, Global Product Development, Pfizer Inc. CATHY J. BRADLEY, Associate Dean for Research, Colorado School of Public Health, and Professor and Deputy Director, University of Colorado Cancer Center OTIS W. BRAWLEY, Bloomberg Distinguished Professor, Department of Epidemiology, Bloomberg School of Public Health, Department of Oncology, School of Medicine, Johns Hopkins University ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network GWEN DARIEN, National Patient Advocate Foundation NANCY E. DAVIDSON, President and Executive Director, Seattle Can- cer Care Alliance; Senior Vice President, Director, and Full Member, Clinical Research Division, Fred Hutchinson Cancer Research Center; and Head, Department of Medicine, Division of Medical Oncology, University of Washington 1 The National Academies of Sciences, Engineering, and Medicine’s forums and round- tables do not issue, review, or approve individual documents. The responsibility for the pub- lished Proceedings of a Workshop rests with the workshop rapporteurs and the institution. vii PREPUBLICATION COPY—Uncorrected Proofs

GEORGE D. DEMETRI, Professor of Medicine and Director, Ludwig Center, Harvard Medical School; Senior Vice President for Experimental Therapeutics, Dana-Farber Cancer Institute; and Associate Director for Clinical Sciences, Dana-Farber/Harvard Cancer Center JAMES H. DOROSHOW, Deputy Director for Clinical and Translational Research, National Cancer Institute NICOLE F. DOWLING, Associate Director for Science, Division of Cancer Prevention and Control, National Center for Chronic Disease Preven- tion and Health Promotion, Centers for Disease Control and Prevention SCOT W. EBBINGHAUS, Vice President and Therapeutic Area Head, Oncology Clinical Research, Merck Research Laboratories KOJO S. J. ELENITOBA-JOHNSON, Professor, Perelman School of Medicine, and Director, Center for Personalized Diagnostics and Divi- sion of Precision and Computational Diagnostics, University of Pennsylvania AWNY FARAJALLAH, Vice President, Head, U.S. Medical Oncology, Bristol-Myers Squibb STANTON L. GERSON, Director, Case Comprehensive Cancer Center; Professor of Hematological Oncology, Case Western Reserve University; and Director, University Hospitals Seidman Cancer Center LORI HOFFMAN HŌGG, Veterans Health Administration National Program Manager for Prevention Policy, National Center for Health Promotion and Disease Prevention, and National Oncology Clinical Advisor, Office of Nursing Services, Department of Veterans Affairs LINDA HOUSE, President, Cancer Support Community HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Ket- tering Cancer Center ERIN HUFMAN, Novartis Oncology ROY A. JENSEN, President, Association of American Cancer Institutes; Director, The University of Kansas Cancer Center; and William R. Jewell, M.D., Distinguished Masonic Professor, Kansas Masonic Cancer Research Institute LISA KENNEDY SHELDON, Chief Clinical Officer, Oncology Nursing Society SAMIR N. KHLEIF, Director, Jeannie and Tony Loop Immuno-Oncology Lab, and Biomedical Scholar and Professor of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center MICHELLE M. LE BEAU, Arthur and Marian Edelstein Professor of Medicine, and Director, The University of Chicago Medicine Comprehensive Cancer Center viii PREPUBLICATION COPY—Uncorrected Proofs

MIA LEVY, Director, Rush University Cancer Center; Associate Professor of Medicine, Division of Hematology and Oncology; and System Vice President, Cancer Services, Rush System for Health J. LEONARD LICHTENFELD, Deputy Chief Medical Officer, American Cancer Society NEAL J. MEROPOL, Vice President, Research Oncology, Flatiron Health MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on Cancer RANDALL A. OYER, Medical Director, Oncology, Ann B. Barshinger Can- cer Institute, Penn Medicine Lancaster General Health RICHARD PAZDUR, Director, Oncology Center of Excellence, and Acting Director, Office of Hematology and Oncology Products, Food and Drug Administration RICHARD L. SCHILSKY, Senior Vice President and Chief Medical Officer, American Society of Clinical Oncology DEBORAH SCHRAG, Chief, Division of Population Sciences, Professor of Medicine, Department of Medical Oncology, Har- vard Medical School, Dana-Farber Cancer Institute LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Direc- tor for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania DAN THEODORESCU, Director, Samuel Oschin Comprehensive Cancer Center, Cedars-Sinai Medical Center GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine, and Director, Holden Comprehensive Cancer Center, The University of Iowa ROBERT A. WINN, Director, Virginia Commonwealth University Cancer Center, and Professor of Internal Medicine, Virginia Commonwealth University National Cancer Policy Forum Staff ERIN BALOGH, Senior Program Officer RUTH COOPER, Senior Program Assistant ANNALEE GONZALES, Administrative Assistant KATHERINE HAWTHORNE, Senior Program Assistant NATALIE LUBIN, Research Assistant MICAH WINOGRAD, Financial Officer EMILY ZEVON, Associate Program Officer SHARYL NASS, Forum Director and Director, Board on Health Care Services ix 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 mak- ing 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 proceedings: BETTY FERRELL, City of Hope National Medical Center DARCI GRAVES, Centers for Medicare & Medicaid Services MANDI PRATT-CHAPMAN, George Washington University Cancer Institute Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by VIVIAN W. PINN, Office of Research on Women’s Health, National Institutes of Health. She was responsible for mak- ing certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final con- tent rests entirely with the rapporteurs and the National Academies. xi PREPUBLICATION COPY—Uncorrected Proofs

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Acknowledgments Support from the many annual sponsors of the National Academies of Sciences, Engineering, and Medicine’s National Cancer Policy Forum is crucial to the work of the forum. 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, Ameri- can Society of Clinical Oncology, Association of American Cancer Institutes, Association of Community Cancer Centers, Bristol-Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Helsinn Therapeutics (U.S.), Inc., Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Pfizer Inc. The forum wishes to express its gratitude to the expert speakers whose presentations helped further the dialogue and advance progress to better sup- port the oncology careforce and improve 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. xiii PREPUBLICATION COPY—Uncorrected Proofs

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Contents ACRONYMS AND ABBREVIATIONS xix PROCEEDINGS OF A WORKSHOP  1 WORKSHOP OVERVIEW 1 HEALTH LITERACY AND COMMUNICATION 2 Leveraging Media for Cancer Education and Prevention, 5 The Role of Culture in Cancer Care and Research, 6 COMMUNICATION ACROSS THE CANCER CARE CONTINUUM9 Prevention and Screening, 9 Cancer Treatment, 10 Adolescents and Young Adults with Cancer, 14 Survivorship Care, 16 Palliative and End-of-Life Care, 18 COMMUNICATION STRATEGIES TO BUILD PUBLIC TRUST AND COUNTER INACCURATE INFORMATION 21 Addressing Online Health Misinformation, 21 Opportunities for Local and State Governments, 22 Conveying Accurate and Accessible Information to the Public, 24 Community Engagement and Health Communication, 25 High-Quality Health Journalism, 26 xv PREPUBLICATION COPY—Uncorrected Proofs

xvi CONTENTS RESEARCH STRATEGIES 27 National Cancer Institute’s Research Portfolio and Priorities for Future Research, 27 Effective Communication about Cancer Genetics, 29 Visual Design Strategies to Improve Cancer Communication, 30 The Role of Health Insurance Literacy in Reducing Patient Financial Burden, 31 PROCEDURES, POLICIES, AND PROGRAMS TO ASSESS AND ADDRESS HEALTH LITERACY NEEDS 33 Strategies for Health Care Organizations to Address Low Health Literacy, 33 Patient Navigation Programs, 34 Supporting Patient Self-Management in Oncology, 37 Policies and Incentives for Health Insurers, 39 STAKEHOLDER PERSPECTIVES AND PRIORITIES 40 Potential Priorities in Research, 40 Potential Priorities in Clinical Care, 41 WRAP-UP42 REFERENCES43 APPENDIX A: Statement of Task 51 APPENDIX B: Workshop Agenda 53 PREPUBLICATION COPY—Uncorrected Proofs

Box, Figures, and Tables BOX 1 Suggestions from Individual Workshop Participants to Improve Communication About Cancer and Meet the Health Literacy Needs of Patients and Their Families, 3 FIGURES 1 Patients’ reasons for visiting the Cancer Preventorium at the Washington Cancer Institute, February 2013–March 2015, 7 2 The six domains of patient-centered communication, 11 3 Physicians are poor judges of their own communication skills, 12 4 Time points for discussing reproductive health with adolescents and young adults with cancer, 15 5 Palliative care needs across the continuum of cancer care, 20 6 Applying design techniques in health messaging, 32 7 Patient navigation support for health literacy and patient–clinician communication across the cancer care continuum, 36 TABLES 1 Patient-Centered Communication Strategies for Cancer Survivors, 18 2 Quality of Reporting in Health Journalism: Results from a Sample of 500 News Stories, 26 xvii PREPUBLICATION COPY—Uncorrected Proofs

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Acronyms and Abbreviations ACS American Cancer Society AYA adolescents and young adults CSER Clinical Sequencing Evidence-Generating Research consortium EHR electronic health record I Can PIC Improving Cancer Patients’ Health Insurance Choices NCI National Cancer Institute NIH National Institutes of Health SCP survivorship care plan UCSF University of California, San Francisco WEIRD Western, educated, industrialized, rich, and democratic xix PREPUBLICATION COPY—Uncorrected Proofs

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Health literacy is a critical skill for engaging in healthy behaviors to reduce disease risk and improve health outcomes across the continuum of cancer care. However, estimates suggest that more than one-third of the U.S. adult population has low health literacy, and nearly half of all patients with cancer have difficulty understanding information about their disease or treatment. Low health literacy among patients with cancer is associated with poor health and treatment outcomes, including lower adherence to treatment, higher rates of missed appointments, and an increased risk of hospitalization. Low health literacy can also impede informed decision making, especially as cancer care becomes increasingly complex and as patients and their families take more active roles in treatment decisions.

To examine opportunities to improve communication across the cancer care continuum, the National Cancer Policy Forum collaborated with the Roundtable on Health Literacy to host a workshop, Health Literacy and Communication Strategies in Oncology, July 15-16, 2019, in Washington, DC. Patients, patient advocates, clinicians, and researchers, representatives of health care organizations, academic medical centers, insurers, and federal agencies explored the challenges of achieving effective communication in cancer care. This publication summarizes the presentations and discussions of the workshop.

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