APPLYING BIG DATA TO ADDRESS THE
SOCIAL DETERMINANTS OF HEALTH
IN ONCOLOGY
PROCEEDINGS OF A WORKSHOP
Erin Balogh, Emily Zevon, Margie Patlak, and Sharyl J. Nass, Rapporteurs
National Cancer Policy Forum
Board on Health Care Services
Health and Medicine Division
Committee on Applied and Theoretical Statistics
Division on Engineering and Physical Sciences
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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This activity was supported by Contract No. 200-2011-38807 (Task Order No. 75D30118F00080) 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: 978-0-309-67903-9
International Standard Book Number-10: 0-309-67903-6
Digital Object Identifier: https://doi.org/10.17226/25835
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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. Applying big data to address the social determinants of health in oncology: Proceedings of a Workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/25835.
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WORKSHOP PLANNING COMMITTEE1
ROBERT A. WINN (Chair), Director, Massey Cancer Center, and Professor of Internal Medicine, School of Medicine, Virginia Commonwealth University
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 Research Professor, and Clinical Research Director, Jerome Lipper Multiple Myeloma Center, Harvard Medical School, Dana-Farber Cancer Institute
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
OTIS W. BRAWLEY, Bloomberg Distinguished Professor, Department of Epidemiology, Bloomberg School of Public Health, Department of Oncology, School of Medicine, Johns Hopkins University
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
STANTON L. GERSON, Director, Case Comprehensive Cancer Center; Professor of Hematological Oncology, Case Western Reserve University; Director, University Hospitals Seidman Cancer Center
LORI HOFFMAN HÖGG, 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
NICHOLAS HORTON, Beitzel Professor of Technology and Society (Statistics and Data Science), Amherst College
RONALD M. KLINE, Chief Medical Officer, U.S. Office of Personnel Management
REBECCA MIKSAD, Senior Medical Director, Flatiron Health
___________________
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.
TIMOTHY REBBECK, Director, Zhu Family Center for Global Cancer Prevention, and Vincent L. Gregory Professor of Cancer Prevention, Harvard T.H. Chan School of Public Health; Professor, Division of Public Sciences, Dana-Farber Cancer Institute
VICTORIA SEEWALDT, Professor and Chair, Department of Population Science and Associate Director, Cancer Control, City of Hope Comprehensive Cancer Center
GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine, and Director, Holden Comprehensive Cancer Center, University of Iowa
ROBIN YABROFF, Senior Scientific Director, Health Services Research, American Cancer Society
Project Staff
ERIN BALOGH, Senior Program Officer
LORI BENJAMIN BRENIG, Research Associate (from May 2020)
RUTH COOPER, Senior Program Assistant (until November 2019)
RUHAMA GARI, Temporary Senior Program Assistant (from September 2019 to 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
SHARYL NASS, Director, National Cancer Policy Forum, and Senior Director, Board on Health Care Services
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 Research Professor, and Clinical Research Director, Jerome Lipper Multiple Myeloma Center, Harvard Medical School, Dana-Farber Cancer Institute
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
LINDA BOHANNON, President, Cancer Support Community
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
CYNTHIA BROGDON, Head of Oncology Portfolio Strategy, Bristol-Myers Squibb
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
GWEN DARIEN, Executive Vice President, Patient Advocacy and Engagement, 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; 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; 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
STANTON L. GERSON, Director, Case Comprehensive Cancer Center; Professor of Hematological Oncology, Case Western Reserve University; Director, University Hospitals Seidman Cancer Center
LORI HOFFMAN HÖGG, 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
HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center
ERIN HUFMAN, Vice President, Oncology Scientific Alliances and Medical Excellence, Novartis Oncology
ROY A. JENSEN, President, Association of American Cancer Institutes; Director, The University of Kansas Cancer Center; 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; Biomedical Scholar and Professor of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center; Member, Society for Immunotherapy of Cancer
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; 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 L. SCHILSKY, Senior Vice President and Chief Medical Officer, American Society of Clinical Oncology
JULIE SCHNEIDER, Associate Director, Research Strategy and Partnership, Food and Drug Administration
DEBORAH SCHRAG, Chief, Division of Population Sciences, and 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, Massey Cancer Center, and Professor of Internal Medicine, School of Medicine, Virginia Commonwealth University
National Cancer Policy Forum Staff
ERIN BALOGH, Senior Program Officer
LORI BENJAMIN BRENIG, Research Associate
ANNALEE GONZALES, Administrative Assistant
KATHERINE HAWTHORNE, Senior Program Assistant
EMILY ZEVON, Associate Program Officer
SHARYL NASS, Director, National Cancer Policy Forum, and Senior 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:
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 ELLEN R. GRITZ, The University of Texas MD Anderson Cancer Center. 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 on opportunities to apply big data to assess and address the social determinants of health in oncology. 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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Barriers to Collecting Patient-Reported Outcomes
Interoperability and Data Standardization
Ensuring Equity and Quality in AI Technologies
POLICIES AND PRACTICES TO ADVANCE PROGRESS
Embracing Diversity and Equity
Promoting Diversity in Clinical Trials
Promoting Patient and Community Engagement and Collaboration
Translating Research into Action
Boxes and Figures
BOXES
2 Examples of Data Sources for Research on the Social Determinants of Health (SDOH) in Cancer
3 Research on Prostate Cancer in Men of African Ancestry (RESPOND)
4 Observational Health Data Sciences and Informatics (OHDSI) Collaboration
6 Legal Protections of Health Data and Patient Privacy
7 Gulf South Clinical Trials Network (GSCTN)
9 Kaiser Permanente’s Efforts to Address Social Needs
FIGURES
1 Conceptual model of health care disparities
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Acronyms and Abbreviations
| ACS | American Community Survey |
| AI | artificial intelligence |
| AIAN | American Indian and Alaska Native |
| ASCO | American Society of Clinical Oncology |
| CBIIT | Center for Biomedical Informatics & Information Technology |
| CBPR | community-based participatory research |
| CMS | Centers for Medicare & Medicaid Services |
| CoC | Commission on Cancer |
| CODE | Center for Open Data Enterprise |
| CRESSH | Center for Research on Environmental and Social Stressors in Housing Across the Life Course |
| EHR | electronic health record |
| EJSCREEN | Environmental Justice Screen |
| FDA | Food and Drug Administration |
| FHIR | Fast Healthcare Interoperability Resources |
| FQHC | federally qualified health center |
| GIS | global information system |
| GPS | global positioning system |
| GSCTN | Gulf South Clinical Trials Network |
| HIPAA | Health Insurance Portability and Accountability Act |
| mCODE | Minimal Common Oncology Data Elements |
| NCDB | National Cancer Database |
| NCI | National Cancer Institute |
| OHDSI | Observational Health Data Sciences and Informatics |
| PRO | patient-reported outcome |
| RESPOND | Research on Prostate Cancer in Men of African Ancestry |
| SDOH | social determinants of health |
| SEER | Surveillance, Epidemiology, and End Results |
| SIREN | Social Interventions Research & Evaluation Network |
| SONNET | Social Needs Network for Evaluation and Translation |
| UPDB | Utah Population Database |
| VA | Department of Veterans Affairs |
| WHO | World Health Organization |
