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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.
×

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

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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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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: 978-0-309-67275-7
International Standard Book Number-10: 0-309-67275-9
Digital Object Identifier: https://doi.org/10.17226/25707

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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.

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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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.

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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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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.

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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.
×

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.

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.
×

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.

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.
×

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.

Page viii Cite
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.
×

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.

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.
×

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.

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.
×

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.

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.
×

Acknowledgment of 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: 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.

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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Page viii Cite
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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Page xiii Cite
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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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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