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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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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
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.
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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.
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.
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.
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.
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.
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.
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.
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Contents
2 DATA SHARING AND DATA PRESERVATION
The Burdens and Benefits of “Long-Tail” Data Sharing
Panel Discussion: Addressing Data Risks and Their Costs
Summaries of Small-Group Discussions
4 TOOLS AND PRACTICES FOR RISK MANAGEMENT, DATA PRESERVATION, AND ACCESSING DECISIONS
Data—What’s It Going to Cost and What’s in It for Me?
Precisely Practicing Medicine from 700 Trillion Points of Data
