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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

Opportunities and Challenges
for Using Digital Health
Applications in Oncology

PROCEEDINGS OF A WORKSHOP

Erin Balogh, Anne Frances Johnson, and Sharyl Nass, Rapporteurs

National Cancer Policy Forum

Board on Health Care Services

Health and Medicine Division

and

Forum on Cyber Resilience

Division on Engineering and Physical Sciences

images

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Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by Contract No. 200-2011-38807 (Task Order No. 75D30120F00089) 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., Sanofi, 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: 978-0-309-08922-7
International Standard Book Number-10: 0-309-08922-0
Digital Object Identifier: https://doi.org/10.17226/26286

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 2021 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. 2021. Opportunities and challenges for using digital health applications in oncology: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26286.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

WORKSHOP PLANNING COMMITTEE1

LAWRENCE N. SHULMAN (Chair), Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania

KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Professor of Behavioral Science; and Director, Center for Energy Balance in Cancer Prevention and Survivorship, The University of Texas MD Anderson Cancer Center

CATHY J. BRADLEY, David F. and Margaret Turley Grohne Chair for Cancer Prevention and Control Research; Professor and Associate Dean for Research, Colorado School of Public Health; and Deputy Director, University of Colorado Cancer Center

DEBORAH ESTRIN, Associate Dean for Impact and Robert V. Tishman ’37 Professor, Computer Science Department, Cornell Tech

LISA KENNEDY SHELDON, Clinical and Scientific Affairs Liaison, Oncology Nursing Society; and Oncology Nurse Practitioner, St. Joseph Hospital

MIA LEVY, Sheba Foundation 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

BRADLEY MALIN, Vice Chair and Professor of Biomedical Informatics, and Professor of Biostatistics and Computer Science, Vanderbilt University Medical Center

DEVEN McGRAW, Chief Regulatory Officer, Ciitizen

NEAL J. MEROPOL, Vice President and Head of Medical and Scientific Affairs, Flatiron Health; and Adjunct Professor, Case Comprehensive Cancer Center

RANDALL A. OYER, Medical Director, Oncology, Ann B. Barshinger Cancer Institute; Medical Director, Cancer Risk Evaluation Program, Penn Medicine Lancaster General Health; and President, Association of Community Cancer Centers

___________________

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. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

Project Staff

ADEGBOYEGA AKINSIKU, Christine Mirzayan Science & Technology Policy Fellow (from January–April 2020)

RACHEL AUSTIN, Senior Program Associate

LORI BENJAMIN BRENIG, Research Associate

ANNALEE GONZALES, Administrative Assistant

LYNETTE MILLETT, Director, Forum on Cyber Resilience

ERIN BALOGH, Co-Director, National Cancer Policy Forum

SHARYL NASS, Co-Director, National Cancer Policy Forum, and Senior Director, Board on Health Care Services

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

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

PETER C. ADAMSON, Global Head, Oncology Development and Pediatric Innovation, Sanofi

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

KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Professor of Behavioral Science; and Director, Center for Energy Balance in Cancer Prevention and Survivorship, The University of Texas MD Anderson Cancer Center

SMITA BHATIA, Professor and Vice Chair of Outcomes for Pediatrics; Gay and Bew White Endowed Chair in Pediatric Oncology; Director, Institute for Cancer Outcomes and Survivorship; and Associate Director for Outcomes Research, Comprehensive Cancer Center, The University of Alabama at Birmingham

CHRIS BOSHOFF, Chief Development Officer, Oncology, Global Product Development, Pfizer Inc.

CATHY J. BRADLEY, David F. and Margaret Turley Grohne Chair for Cancer Prevention and Control Research; Professor and Associate Dean for Research, Colorado School of Public Health; 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, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University

CYNTHIA BROGDON, Head, U.S. Oncology Portfolio Strategy, Bristol-Myers Squibb

WILLIAM G. CANCE, Chief Medical and Scientific Officer, American Cancer Society

___________________

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. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network

CHRISTINA CHAPMAN, Assistant Professor of Radiation Oncology, University of Michigan

GWEN DARIEN, Executive Vice President, Patient Advocacy and Engagement, National Patient Advocate Foundation

NANCY E. DAVIDSON, President and Executive Director, Seattle Cancer Care Alliance; Raisebeck Endowed Chair for Collaborative Research, Senior Vice President, Director, and Professor, Clinical Research Division, Fred Hutchinson Cancer Research Center, and Head, Department of Medicine, Division of Medical Oncology, University of Washington

JAMES H. DOROSHOW, Director, Division of Cancer Treatment and Diagnosis; Deputy Director for Clinical and Translational Research; and Head, Oxidative Signaling and Molecular Therapeutics Group, National Cancer Institute

NICOLE F. DOWLING, Associate Director for Science, Division of Cancer Prevention and Control, 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

STANTON L. GERSON, Director, Case Comprehensive Cancer Center; Interim Dean and Senior Vice President, Medical Affairs, School of Medicine; Professor, Department of Medicine and Department of Environmental Health Sciences; Director, National Center for Regenerative Medicine, Case Western Reserve University

JULIE R. GRALOW, Executive Vice President and Chief Medical Officer, American Society of Clinical Oncology

ROY S. HERBST, Ensign Professor of Medicine and Professor of Pharmacology; Director, Center for Thoracic Cancers; Chief of Medical Oncology, Yale Cancer Center and Smilow Cancer Hospital; Associate Cancer Center Director, Translational Science, Yale School of Medicine

HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

CHANITA HUGHES-HALBERT, Vice Chair for Research and Professor, Department of Preventive Medicine, Associate Director for Cancer Equity, Norris Comprehensive Cancer Center, University of Southern California

MIMI HUIZINGA, Vice President and Head, U.S. Oncology Medical, Novartis Oncology

ROY A. JENSEN, Director, The University of Kansas Cancer Center; William R. Jewell, M.D. Distinguished Masonic Professor, Kansas Masonic Cancer Research Institute; and Immediate Past President, Association of American Cancer Institutes

RANDY A. JONES, Professor of Nursing, Robert Wood Johnson Foundation Nurse Faculty Scholar Alumnus, University of Virginia School of Nursing

BETH Y. KARLAN, Vice Chair, Women’s Health Research Professor, Department of Obstetrics and Gynecology, David Geffen School of Medicine; and Director, Cancer Population Genetics, Jonsson Comprehensive Cancer Center, University of California, Los Angeles

SAMIR N. KHLEIF, Director, Jeannie and Tony Loop ImmunoOncology Lab; and Biomedical Scholar and Professor of Oncology, Georgetown Lombardi Comprehensive Cancer Center, Georgetown University Medical Center

MIA LEVY, Sheba Foundation Director, Rush University Cancer Center; Associate Professor of Medicine, Division of Hematology and Oncology; and System Vice President, Cancer Services, Rush System for Health

SCOTT M. LIPPMAN, Director, Moores Cancer Center; Distinguished Professor of Medicine, Senior Associate Dean, and Associate Vice Chancellor for Cancer Research and Care, and Chugai Pharmaceutical Chair in Cancer, University of California, San Diego

NEAL J. MEROPOL, Vice President and Head of Medical and Scientific Affairs, Flatiron Health; and Adjunct Professor, Case Comprehensive Cancer Center

LARISSA NEKHLYUDOV, Professor of Medicine, Harvard Medical School; Internist, Brigham and Women’s Hospital; and Clinical Director, Internal Medicine for Cancer Survivors, Dana-Farber Cancer Institute

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

RANDALL A. OYER, Medical Director, Oncology, Ann B. Barshinger Cancer Institute; Medical Director, Cancer Risk Evaluation Program, Penn Medicine Lancaster General Health; and President, Association of Community Cancer Centers

CLEO A. SAMUEL-RYALS, Associate Professor of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill

RICHARD L. SCHILSKY, Principal Investigator, American Society of Clinical Oncology Targeted Agent and Profiling Utilization Registry (TAPURTM) Study; and Professor Emeritus, University of Chicago

JULIE SCHNEIDER, Associate Director, Research Strategy and Partnership, Oncology Center of Excellence, Food and Drug Administration

SUSAN M. SCHNEIDER, Associate Professor, Emerita, Duke University School of Nursing

LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania

LARA STRAWBRIDGE, Director, Division of Ambulatory Payment Models, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services

GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine and Pharmaceutical Science, and Director, Holden Comprehensive Cancer Center, The University of Iowa

ROBERT A. WINN, Director, Massey Cancer Center; Senior Associate Dean for Cancer Innovation; Professor, Pulmonary Disease and Critical Care Medicine; and Lipman Chair in Oncology, School of Medicine, Virginia Commonwealth University

PHYLICIA L. WOODS, Executive Director, Cancer Policy Institute, Cancer Support Community

National Cancer Policy Forum Staff

FRANCIS AMANKWAH, Program Officer

RACHEL AUSTIN, Senior Program Assistant

LORI BENJAMIN BRENIG, Research Associate

ANNALEE GONZALES, Administrative Assistant

MICAH WINOGRAD, Senior Finance Business Partner

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

ERIN BALOGH, Co-Director, National Cancer Policy Forum

SHARYL J. NASS, Co-Director, National Cancer Policy Forum, and Senior Director, Board on Health Care Services

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
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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:

CHRISTOPHER R. COGLE, University of Florida

PAUL KLUETZ, Food and Drug Administration

SUSAN K. PETERSON, The University of Texas MD Anderson Cancer Center

KRISTEN B. ROSATI, Coppersmith Brockelman PLC

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 DANIEL MASYS, University of Washington. He 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. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

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., Sanofi, and Society for Immunotherapy of Cancer.

The forum wishes to express its gratitude to the expert speakers whose presentations helped further the dialogue on opportunities to advance progress in the effective and safe development, implementation, and use of digital health in oncology research and 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. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
×

Acronyms and Abbreviations

AI artificial intelligence
BRCA BReast CAncer gene
CDRH Center for Devices and Radiological Health
CMS Centers for Medicare & Medicaid Services
CodeX Common Oncology Data Elements eXtensions
EHR electronic health record
ENE extranodal extension
ePRO electronic patient-reported outcome
FDA Food and Drug Administration
FHIR Fast Healthcare Interoperability Resources
GA4GH Global Alliance for Genomics and Health
GDO Genetic Discrimination Observatory
HIPAA Health Insurance Portability and Accountability Act
HITECH Act Health Information Technology for Economic and Clinical Health Act
mCODE Minimal Common Oncology Data Elements
ML machine learning
Page xxii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
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MSK Memorial Sloan Kettering
MSKCC Memorial Sloan Kettering Cancer Center
PRO patient-reported outcome
PRO-CTCAETM PRO-Common Terminology Criteria for Adverse Events
PROVE Patient-Reported Outcomes, Value & Experience
SEER Surveillance, Epidemiology, and End Results program
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2021. Opportunities and Challenges for Using Digital Health Applications in Oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26286.
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Digital health encompasses a broad array of tools and strategies with the goals of advancing research, increasing health care access and quality, and making care more personalized. It encompasses health content, digital health interventions, and digital applications, such as communication tools connecting patients and clinicians (e.g., secure email in the patient portal, text, chat, video visit), remote monitoring tools, clinical decision support tools, and systems for exchanging health information. Patient-facing tools, tools for clinicians, and systems to facilitate research and care improvement are all part of this diverse landscape, and each raises unique opportunities and potential challenges.

To examine key policy issues for the effective and safe development, implementation, and use of digital health technologies in oncology research and care, the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine held a virtual workshop in collaboration with the Forum on Cyber Resilience. The workshop, Opportunities and Challenges for Using Digital Health Applications in Oncology, held on July 13-14, 2020, convened a broad group of experts, including clinicians and researchers; patient advocates; and representatives of federal agencies, health professional societies, health care organizations, insurers, and the pharmaceutical and health technology industries. Many workshop speakers found the opportunities presented by digital health tools to be particularly compelling for oncology; however, capitalizing on these opportunities necessitates careful attention to the design, implementation, and use of digital health technologies. This publication summarizes the presentations and discussions from the workshop.

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