National Academies Press: OpenBook
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

LIFE-CYCLE DECISIONS
FOR BIOMEDICAL DATA

The Challenge of Forecasting Costs

Committee on Forecasting Costs for Preserving and Promoting Access to Biomedical Data

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

A Consensus Study Report of

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

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

This activity was supported by Contract No. HHSN26300002 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: 978-0-309-67003-6
International Standard Book Number-10: 0-309-67003-9
Digital Object Identifier: https://doi.org/10.17226/25639

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.

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. https://doi.org/10.17226/25639.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

Image

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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

Image

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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

COMMITTEE 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 C. 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 N. MEYER, Geisinger

WILLIAM W. STEAD, NAM, Vanderbilt University Medical Center

LARS VILHUBER, Cornell University

Staff

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 (until December 2019)

CHRISTOPHER FU, Research Associate, Board on Mathematical Sciences and Analytics (until August 2019)

ADRIANNA HARGROVE, Financial Manager

TYLER KLOEFKORN, Program Officer, Board on Mathematical Sciences and Analytics

MICHELLE SCHWALBE, Director, Board on Mathematical Sciences and Analytics

LINDA WALKER, Program Coordinator, Board on Physics and Astronomy

BEN WATZAK, Research Assistant, Board on Mathematical Sciences and Analytics

___________________

1 Member, National Academy of Sciences.

2 Member, National Academy of Medicine.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

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

RUSSEL E. CAFLISCH, NAS,2 New York University

W. PETER CHERRY, NAE, Independent Consultant

DAVID S.C. CHU, Institute for Defense Analyses

RONALD R. COIFMAN, NAS, Yale University

JAMES (JIM) CURRY, University of Colorado, Boulder

SHAWNDRA HILL, Microsoft Research

LYDIA KAVRAKI, NAM,3 Rice University

TAMARA KOLDA, NAE, Sandia National Laboratories

RACHEL KUSKE, Georgia Institute of Technology

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 (until December 2019)

CHRISTOPHER FU, Research Associate (until August 2019)

ADRIANNA HARGROVE, Finance Business Partner

TYLER KLOEFKORN, Program Officer

BEN WATZAK, Research Assistant

___________________

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. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

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 (until December 2019)

CHRISTOPHER FU, Research Associate (until August 2019)

ADRIANNA HARGROVE, Financial Manager

BEN WATZAK, Research Assistant

___________________

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. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

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

MARK HOROWITZ, NAE, Stanford University

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, NAE, 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

BRENDAN ROACH, 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. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

BOARD ON LIFE SCIENCES

JAMES P. COLLINS, Arizona State University, Chair

A. ALONSO AGUIRRE, George Mason University

VALERIE H. BONHAM, Ropes and Gray LLP

DOMINIQUE BROSSARD, University of Wisconsin, Madison

NANCY D. CONNELL, Johns Hopkins Center for Health Security

SEAN M. DECATUR, Kenyon College

JOSEPH R. ECKER, NAS,1 Howard Hughes Medical Institute

SCOTT V. EDWARDS, NAS, Harvard University

GERALD L. EPSTEIN, National Defense University

ROBERT J. FULL, University of California, Berkeley

MARY E. MAXON, Lawrence Berkeley National Laboratory

ROBERT NEWMAN, Independent Consultant

STEPHEN J. O’BRIEN, NAS, Nova Southeastern University

LUCILA OHNO-MACHADO, NAM,2 University of California, San Diego

CLAIRE POMEROY, NAM, The Albert and Mary Lasker Foundation

MARY E. POWER, NAS, University of California, Berkeley

SUSAN R. SINGER, Rollins College

LANA SKIRBOLL, Sanofi

DAVID R. WALT, NAE3/NAM, Brigham and Women’s Hospital

PHYLLIS M. WISE, NAM, University of Colorado

Staff

FRAN SHARPLES, Director

KATHERINE BOWMAN, Senior Program Officer

JESSICA DE MOUY, Senior Program Assistant

ANDREA HODGSON, Program Officer

JO HUSBANDS, Scholar/Senior Project Director

STEVEN MOSS, Associate Program Officer

KEEGAN SAWYER, Senior Program Officer

AUDREY THEVENON, Program Officer

KOSSANA YOUNG, Senior Program Assistant

___________________

1 Member, National Academy of Sciences.

2 Member, National Academy of Medicine.

3 Member, National Academy of Engineering.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

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

MARY LEE KENNEDY, Association of Research Libraries

BAREND MONS, Leiden University Medical Centre

SARAH NUSSER, Iowa State University

MICHAEL STEBBINS, Science Advisors, LLC

Staff

TOM ARRISON, Director

EMI KAMEYAMA, Associate Program Officer

GEORGE STRAWN, Scholar

ESTER SZTEIN, Deputy Director

___________________

1 Member, National Academy of Medicine.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

Acknowledgment of Reviewers

This Consensus Study Report 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 report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.

We thank the following individuals for their review of this report:

Helen Berman, Rutgers, The State University of New Jersey,

David Browdy, Fred Hutchinson Cancer Research Center,

Mercè Crosas, Harvard University,

Brandi Davis-Dusenbery, Seven Bridges,

Mark Ellisman, National Center for Microscopy and Imaging Research,

Adam Ferguson, University of California, San Francisco,

Aaron Friedman, Amazon Web Services,

Peter Jones, NAS,1 Van Andel Institute,

Brian Lavoie, OCLC Research,

Margo Seltzer, NAE,2 University of British Columbia,

Douglas Sicker, Carnegie Mellon University,

Sharon Terry, Genetic Alliance, and

Carol Thompson, Allen Institute.

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by Susan J. Curry, NAM,3 University of Iowa. She was responsible for

___________________

1 Member, National Academy of Sciences.

2 Member, National Academy of Engineering.

3 Member, National Academy of Medicine.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

making certain that an independent examination of this report 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 authoring committee and the National Academies.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page R8
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Page R9
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Page R12
Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
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Biomedical research results in the collection and storage of increasingly large and complex data sets. Preserving those data so that they are discoverable, accessible, and interpretable accelerates scientific discovery and improves health outcomes, but requires that researchers, data curators, and data archivists consider the long-term disposition of data and the costs of preserving, archiving, and promoting access to them.

Life Cycle Decisions for Biomedical Data examines and assesses approaches and considerations for forecasting costs for preserving, archiving, and promoting access to biomedical research data. This report provides a comprehensive conceptual framework for cost-effective decision making that encourages data accessibility and reuse for researchers, data managers, data archivists, data scientists, and institutions that support platforms that enable biomedical research data preservation, discoverability, and use.

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