Health Literacy and
Communication Strategies
in Oncology
PROCEEDINGS OF A WORKSHOP
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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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 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, Bristol-Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Merck, National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Pfizer Inc., and Society for Immunotherapy of Cancer. 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: 978-0-309-67105-7
International Standard Book Number-10: 0-309-67105-1
Digital Object Identifier: https://doi.org/10.17226/25664
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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.
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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, JR., President and Chief Executive Officer, Emeritus, Dana-Farber Cancer Institute, and 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
___________________
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.
CATHY MEADE, Senior Member, Division of Population Science, Health Outcomes, and Behavior, Moffitt Cancer Center
RANDALL A. OYER, Medical Director, Oncology, Ann B. Barshinger Cancer Institute, Penn Medicine Lancaster General Health
ROBERT A. WINN, Director, Virginia Commonwealth University Massey Cancer Center, and Professor of Internal Medicine, Virginia Commonwealth University
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
NATIONAL CANCER POLICY FORUM1
EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer, Emeritus, Dana-Farber Cancer Institute, and 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 Cancer 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 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.
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 Prevention 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 Division 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 Kettering 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
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 Cancer 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, Harvard Medical School, Dana-Farber Cancer Institute
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director 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 Massey 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
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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 proceedings:
BETTY FERRELL, City of Hope National Medical Center
DARCI GRAVES, Centers for Medicare & Medicaid Services
MANDI PRATT-CHAPMAN, The George Washington University Cancer Institute
Although the reviewers listed above provided many constructive comments 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 making 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 content rests entirely with the rapporteurs and the National Academies.
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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, American 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, Merck, National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Pfizer Inc., and Society for Immunotherapy of Cancer.
The forum wishes to express its gratitude to the expert speakers whose presentations helped further the dialogue and advance progress to better support 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.
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Contents
HEALTH LITERACY AND COMMUNICATION
Leveraging Media for Cancer Education and Prevention
The Role of Culture in Cancer Care and Research
COMMUNICATION ACROSS THE CANCER CARE CONTINUUM
Adolescents and Young Adults with Cancer
Palliative and End-of-Life Care
COMMUNICATION STRATEGIES TO BUILD PUBLIC TRUST AND COUNTER INACCURATE INFORMATION
Addressing Online Health Misinformation
Opportunities for Local and State Governments
Conveying Accurate and Accessible Information to the Public
National Cancer Institute’s Research Portfolio and Priorities for Future Research
Effective Communication About Cancer Genetics
Visual Design Strategies to Improve Cancer Communication
The Role of Health Insurance Literacy in Reducing Patient Financial Burden
PROCEDURES, POLICIES, AND PROGRAMS TO ASSESS AND ADDRESS HEALTH LITERACY NEEDS
Strategies for Health Care Organizations to Address Low Health Literacy
Supporting Patient Self-Management in Oncology
Policies and Incentives for Health Insurers
STAKEHOLDER PERSPECTIVES AND PRIORITIES
Potential Priorities in Research
Box, Figures, and Tables
BOX
FIGURES
2 The six domains of patient-centered communication
3 Physicians are poor judges of their own communication skills
4 Time points for discussing reproductive health with adolescents and young adults with cancer
5 Palliative care needs across the continuum of cancer care
6 Applying design techniques in health messaging
TABLES
1 Patient-Centered Communication Strategies for Cancer Survivors
2 Quality of Reporting in Health Journalism: Results from a Sample of 500 News Stories
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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’ 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 |
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