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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.
×

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

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Washington, DC
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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.
×

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

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.

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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.

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.
×

Image

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.

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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

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.
×

Image

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 statements 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 Academies, please visit www.nationalacademies.org/about/whatwedo.

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.
×

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.

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.
×

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

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.
×

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.

Page viii Cite
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.
×

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

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.
×

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

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.
×

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.

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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Page xiii Cite
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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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.

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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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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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
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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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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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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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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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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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 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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