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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25707.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Prepublication Copy – Subject to Further Editorial Correction Planning for Long-Term Use of Biomedical Data PROCEEDINGS OF A WORKSHOP Linda Casola, Rapporteur Board on Mathematical Sciences and Analytics Committee on Applied and Theoretical Statistics Computer Science and Telecommunications Board Division on Engineering and Physical Sciences Board on Life Sciences Division on Earth and Life Studies Board on Research Data and Information Policy and Global Affairs PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by Contract No. HHSN263002 with the National Institutes of Health. 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/10.17226/25707 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. Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/25707. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION

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. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis 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 – SUBJECT TO FURTHER EDITORIAL CORRECTION

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. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION

COMMITTEE ON THE WORKSHOP ON FORECASTING COSTS FOR PRESERVING AND PROMOTING ACCESS TO BIOMEDICAL DATA DAVID S.C. CHU, Institute for Defense Analyses, Chair ILKAY ALTINTAS, University of California, San Diego G. SAYEED CHOUDHURY, Johns Hopkins University MARGARET LEVENSTEIN, University of Michigan CLIFFORD A. LYNCH, Coalition for Networked Information DAVID MAIER, Portland State University CHARLES F. MANSKI, NAS,1 Northwestern University MARYANN MARTONE, University of California, San Diego ALEXA T. MCCRAY, NAM,2 Harvard Medical School MICHELLE MEYER, Geisinger WILLIAM W. STEAD, NAM, Vanderbilt University Medical Center LARS VILHUBER, Cornell University Staff TYLER KLOEFKORN, Program Officer, Board on Mathematical Sciences and Analytics, Workshop Director SAMMANTHA L. MAGSINO, Senior Program Officer, Board on Earth Sciences and Resources, Study Director SELAM ARAIA, Senior Program Assistant, Board on Mathematical Sciences and Analytics LINDA CASOLA, Associate Program Officer, Board on Mathematical Sciences and Analytics CHRISTOPHER FU, Research Associate, Board on Mathematical Sciences and Analytics ADRIANNA HARGROVE, Financial Manager MICHELLE SCHWALBE, Director, Board on Mathematical Sciences and Analytics LINDA WALKER, Program Coordinator, Board on Physics and Astronomy 1 Member, National Academy of Sciences. 2 Member, National Academy of Medicine. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION v

BOARD ON MATHEMATICAL SCIENCES AND ANALYTICS MARK L. GREEN, University of California, Los Angeles, Chair HÉLÈNE BARCELO, Mathematical Sciences Research Institute JOHN R. BIRGE, NAE,1 University of Chicago W. PETER CHERRY, NAE, Independent Consultant DAVID S.C. CHU, Institute for Defense Analyses RONALD R. COIFMAN, NAS,2 Yale University JAMES (JIM) CURRY, University of Colorado Boulder SHAWNDRA HILL, Microsoft Research LYDIA KAVRAKI, NAM, 3 Rice University TAMARA KOLDA, Sandia National Laboratories JOSEPH A. LANGSAM, University of Maryland, College Park DAVID MAIER, Portland State University LOIS CURFMAN MCINNES, Argonne National Laboratory JILL PIPHER, Brown University ELIZABETH A. THOMPSON, NAS, University of Washington CLAIRE TOMLIN, NAE, University of California, Berkeley LANCE WALLER, Emory University KAREN E. WILLCOX, University of Texas, Austin Staff MICHELLE SCHWALBE, Director SELAM ARAIA, Senior Program Assistant LINDA CASOLA, Associate Program Officer CHRISTOPHER FU, Research Associate (until August 2019) ADRIANNA HARGROVE, Finance Business Partner TYLER KLOEFKORN, Program Officer 1 Member, National Academy of Engineering. 2 Member, National Academy of Sciences. 3 Member, National Academy of Medicine. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION vi

COMMITTEE ON APPLIED AND THEORETICAL STATISTICS ALFRED O. HERO III, University of Michigan, Chair ALICIA CARRIQUIRY, NAM,1 Iowa State University RONG CHEN, Rutgers University, The State University of New Jersey MICHAEL J. DANIELS, University of Florida KATHERINE BENNETT ENSOR, Rice University AMY H. HERRING, Duke University TIM HESTERBERG, Google, Inc. NICHOLAS J. HORTON, Amherst College DAVID MADIGAN, Columbia University XIAO-LI MENG, Harvard University JOSÉ M.F. MOURA, NAE,2 Carnegie Mellon University RAQUEL PRADO, University of California, Santa Cruz NANCY M. REID, NAS,3 University of Toronto CYNTHIA RUDIN, Duke University AARTI SINGH, Carnegie Mellon University ALYSON G. WILSON, North Carolina State University Staff TYLER KLOEFKORN, Director SELAM ARAIA, Senior Program Assistant LINDA CASOLA, Associate Program Officer CHRISTOPHER FU, Research Associate (until August 2019) ADRIANNA HARGROVE, Financial Manager 1 Member, National Academy of Medicine. 2 Member, National Academy of Engineering. 3 Member, National Academy of Sciences. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION vii

COMPUTER SCIENCE AND TELECOMMUNICATIONS BOARD FARNAM JAHANIAN, Carnegie Mellon University, Chair STEVEN M. BELLOVIN, NAE,1 Columbia University DAVID CULLER, NAE, University of California, Berkeley EDWARD FRANK, NAE, Cloud Parity, Inc. LAURA HAAS, NAE, University of Massachusetts Amherst ERIC HORVITZ, NAE, Microsoft Corporation BETH MYNATT, Georgia Institute of Technology CRAIG PARTRIDGE, Colorado State University DANIELA RUS, NAE, Massachusetts Institute of Technology FRED B. SCHNEIDER, NAE, Cornell University MARGO SELTZER, University of British Columbia MOSHE VARDI, NAS2/NAE, Rice University Staff JON EISENBERG, Senior Board Director SHENAE BRADLEY, Administrative Assistant RENEE HAWKINS, Financial and Administrative Manager LYNETTE I. MILLETT, Associate Director KATIRIA ORTIZ, Associate Program Officer 1 Member, National Academy of Engineering. 2 Member, National Academy of Sciences. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION viii

BOARD ON LIFE SCIENCES JAMES P. COLLINS, Arizona State University, Chair A. ALONSO AGUIRRE, George Mason University ENRIQUETA C. BOND, NAM,1 Burroughs Wellcome Fund DOMINIQUE BROSSARD, University of Wisconsin-Madison ROGER D. CONE, NAS2/NAM, University of Michigan NANCY D. CONNELL, Johns Hopkins Center for Health Security SEAN M. DECATUR, Kenyon College JOSEPH R. ECKER, NAS, Howard Hughes Medical Institute SCOTT V. EDWARDS, NAS, Harvard University GERALD L. EPSTEIN, National Defense University ROBERT J. FULL, University of California, Berkeley ELIZABETH HEITMAN, University of Texas Southwestern Medical Center MARY E. MAXON, Lawrence Berkeley National Laboratory ROBERT NEWMAN, Independent Consultant STEPHEN J. O’BRIEN, NAS, Nova Southeastern University CLAIRE POMEROY, NAM, The Albert and Mary Lasker Foundation MARY E. POWER, NAS, University of California, Berkeley SUSAN RUNDELL SINGER, Rollins College LANA SKIRBOLL, Sanofi DAVID R. WALT, NAE3/NAM, Harvard Medical School Staff FRAN SHARPLES, Director LIDA ANESTIDOU, Senior Program Officer KATHERINE BOWMAN, Senior Program Officer JESSICA DE MOUY, Senior Program Assistant ANDREA HODGSON, Program Officer JO HUSBANDS, Scholar/Senior Project Director KEEGAN SAWYER, Senior Program Officer AUDREY THEVENON, Program Officer KOSSANA YOUNG, Senior Program Assistant 1 Member, National Academy of Medicine. 2 Member, National Academy of Sciences. 3 Member, National Academy of Engineering. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION ix

BOARD ON RESEARCH DATA AND INFORMATION ALEXA T. MCCRAY, NAM,1 Harvard Medical School, Chair AMY BRAND, Massachusetts Institute of Technology Press STUART FELDMAN, Schmidt Futures SALMAN HABIB, Argonne National Laboratory JAMES HENDLER, Rensselaer Polytechnic Institute ELLIOT E. MAXWELL, e-Maxwell and Associates BAREND MONS, Leiden University Medical Centre SARAH NUSSER, Iowa State University MICHAEL STEBBINS, Science Advisors, LLC Staff GEORGE STRAWN, Director ESTER SZTEIN, Deputy Director TOM ARRISON, Program Director ADRIANA COUREMBIS, Financial Officer REGINALD HAYES, Senior Program Assistant EMI KAMEYAMA, Associate Program Officer 1 Member, National Academy of Medicine. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION x

Acknowledgments 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: Warren Kibbe, Duke University, and Michelle Meyer, Geisinger. We also thank staff member Scott Weidman for reading and providing helpful comments on the manuscript. 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 Bradford H. Gray, NAM,1 The Urban Institute (retired). He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteur and the National Academies. 1 Member, National Academy of Medicine. PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION xi

Contents 1 INTRODUCTION 1-1 Workshop Overview, 1-1 Opening Remarks, 1-2 2 DATA SHARING AND DATA PRESERVATION 2-1 The Burdens and Benefits of “Long-Tail” Data Sharing, 2-1 Panel Discussion: Researchers’ Perspectives on Managing Risks and Forecasting Costs for Long-Term Data Preservation, 2-5 3 DATA RISKS AND COSTS 3-1 Panel Discussion: Addressing Data Risks and Their Costs, 3-1 Summaries of Small-Group Discussions, 3-5 4 TOOLS AND PRACTICES FOR RISK MANAGEMENT, DATA PRESERVATION, AND ACCESSING DECISIONS 4-1 Data—What’s It Going to Cost and What’s in It for Me?, 4-1 Precisely Practicing Medicine from 700 Trillion Points of Data, 4-3 5 LIFETIME DATA COSTS 5-1 Panel Discussion: Incentives, Mechanisms, and Practices for Improved Awareness of Cost Consequences in Data Decisions, 5-1 Summaries of Small-Group Discussions, 5-7 6 REFLECTIONS AND NEXT STEPS 6-1 Panel Discussion: Researchers’ Perspectives on Next Steps, 6-1 Themes and Opportunities, 6-3 REFERENCES R-1 APPENDIXES A Workshop Agenda A-1 B Biographical Sketches of Committee B-1 C Registered In-Person Workshop Participants C-1 PREPUBLICATION COPY – SUBJECT TO FURTHER EDITORIAL CORRECTION xii

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Biomedical research data sets are becoming larger and more complex, and computing capabilities are expanding to enable transformative scientific results. The National Institutes of Health's (NIH's) National Library of Medicine (NLM) has the unique role of ensuring that biomedical research data are findable, accessible, interoperable, and reusable in an ethical manner. Tools that forecast the costs of long-term data preservation could be useful as the cost to curate and manage these data in meaningful ways continues to increase, as could stewardship to assess and maintain data that have future value.

The National Academies of Sciences, Engineering, and Medicine convened a workshop on July 11-12, 2019 to gather insight and information in order to develop and demonstrate a framework for forecasting long-term costs for preserving, archiving, and accessing biomedical data. Presenters and attendees discussed tools and practices that NLM could use to help researchers and funders better integrate risk management practices and considerations into data preservation, archiving, and accessing decisions; methods to encourage NIH-funded researchers to consider, update, and track lifetime data; and burdens on the academic researchers and industry staff to implement these tools, methods, and practices. This publication summarizes the presentations and discussion of the workshop.

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