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Suggested Citation:"Front Matter." 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. doi: 10.17226/25835.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25835.
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Suggested Citation:"Front Matter." 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. doi: 10.17226/25835.
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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 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. 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 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, 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-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25835 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. ­ Applying big data to address the social determinants of health in oncology: ­ roceedings P of a ­Workshop. Washington, DC: The National Academies Press. https://doi.org/ 10.17226/25835. 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 ROBERT A. WINN (Chair), Director, Massey Cancer Center, and Professor of Internal Medicine, School of Medicine, Virginia Commonwealth University GARNET 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 speak- ers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution. v PREPUBLICATION COPY—Uncorrected Proofs

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 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 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 CYNTHIS 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 roundta- bles 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; 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 viii PREPUBLICATION COPY—Uncorrected Proofs

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 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: CHANITA HUGHES-HALBERT, Medical University of South Carolina FRANCINE LADEN, Harvard T.H. Chan School of Public Health SCARLETT LIN GOMEZ, University of California, San Francisco 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 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. 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 ­ adiology, American R Society of Clinical Oncology, Association of American Cancer Institutes, Asso- ciation 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. xiii PREPUBLICATION COPY—Uncorrected Proofs

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Contents ACRONYMS AND ABBREVIATIONS xix PROCEEDINGS OF A WORKSHOP 1 WORKSHOP OVERVIEW 1 Social Determinants of Health, 2 Big Data, 10 DATA COLLECTION OPPORTUNITIES 11 Key SDOH to Measure, 11 Sources of Data, 12 Geographic-Level Data, 12 Individual-Level Data, 16 Combining Individual-Level and Geographic-Level Data Sources, 17 Data-Sharing Incentives, 17 DATA TECHNIQUES AND ANALYTIC STRATEGIES 18 Artificial Intelligence, 18 Statistical Techniques, 20 RESEARCH OPPORTUNITIES 21 CHALLENGES 25 Cultural Factors, 25 Lack of Trust, 25 Implicit Bias, 26 Lack of Collaboration, 27 xv PREPUBLICATION COPY—Uncorrected Proofs

xvi CONTENTS Barriers to Collecting Patient-Reported Outcomes, 27 Education and Training, 28 Technical Factors, 29 Interoperability and Data Standardization, 29 Ensuring Equity and Quality in AI Technologies, 31 Legal Factors, 32 POLICIES AND PRACTICES TO ADVANCE PROGRESS 36 Embracing Diversity and Equity, 36 Promoting Diversity in Clinical Trials, 37 Promoting Patient and Community Engagement and Collaboration, 38 Translating Research into Action, 41 Implementing Data Policies and Standards, 42 Data Collection and Analysis, 42 Privacy Protections, 45 Revising Payment Policies, 46 Supporting SDOH Research, 47 WRAP-UP 48 REFERENCES 49 APPENDIX A: STATEMENT OF TASK 55 APPENDIX B: WORKSHOP AGENDA 57 PREPUBLICATION COPY—Uncorrected Proofs

Boxes and Figures BOXES 1 Suggestions from Individual Workshop Participants to Apply Big Data to Assess and Address the Social Determinants of Health (SDOH) in Oncology, 3 2 Examples of Data Sources for Research on the Social Determinants of Health (SDOH) in Cancer, 13 3 Research on Prostate Cancer in Men of African Ancestry (RESPOND), 24 4 Observational Health Data Sciences and Informatics (OHDSI) Collaboration, 29 5 The Gravity Project, 30 6 Legal Protections of Health Data and Patient Privacy, 33 7 Gulf South Clinical Trials Network (GSCTN), 38 8 Our Voice, 40 9 Kaiser Permanente’s Efforts to Address Social Needs, 43 FIGURES 1 Conceptual model of health care disparities, 7 2 The exposome, 7 3 Sources of SDOH data, 16 4 Availability of SDOH indicators, 22 5 The iceberg of HIPAA oversight, 34 xvii PREPUBLICATION COPY—Uncorrected Proofs

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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 xix PREPUBLICATION COPY—Uncorrected Proofs

xx ACRONYMS AND ABBREVIATIONS 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 PREPUBLICATION COPY—Uncorrected Proofs

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The National Academies of Sciences, Engineering, and Medicine held the workshop Applying Big Data to Address the Social Determinants of Health in Oncology on October 28–29, 2019, in Washington, DC. This workshop examined social determinants of health (SDOH) in the context of cancer, and considered opportunities to effectively leverage big data to improve health equity and reduce disparities. The workshop featured presentations and discussion by experts in technology, oncology, and SDOH, as well as representatives from government, industry, academia, and health care systems. This publication summarizes the presentations and discussions from the workshop.

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