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Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop (2020)

Chapter: Appendix C: Registered In-Person Workshop Participants

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Page 76 Cite
Suggested Citation:"Appendix C: Registered In-Person Workshop Participants." 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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C

Registered In-Person Workshop Participants

Ilkay Altintas, San Diego Supercomputer Center, University of California, San Diego

Sameer Antani, National Institutes of Health

Tom Arrison, National Academies of Sciences, Engineering, and Medicine

Nuno Bandeira, University of California, San Diego

Charles Barlow, Cambridge Associates

Partha Bhattacharyya, National Institutes of Health

Philip Bourne, University of Virginia

Patti Brennan, National Library of Medicine, National Institutes of Health

William Bruner, Gadgettronix

Edward Bunker, Johns Hopkins University School of Medicine

Atul Butte, University of California, San Francisco

Linda Casola, National Academies of Sciences, Engineering, and Medicine

John Chodacki, University of California Curation Center, California Digital Library

Sayeed Choudhury, Johns Hopkins University

David Chu, Institute for Defense Analyses

Patricia Cifuentes, independent researcher

Rebecca Clark, National Institutes of Health

Melissa Cragin, San Diego Supercomputer Center

Ivor D’Souza, National Library of Medicine

Page 77 Cite
Suggested Citation:"Appendix C: Registered In-Person Workshop Participants." 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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Maria Doa, U.S. Environmental Protection Agency

Benjamin Falk, Johns Hopkins University

Adam Ferguson, University of California, San Francisco

Jason Gerson, Patient-Centered Outcomes Research Institute

Maëva Ghonda, Institute of Electrical and Electronics Engineers

Jessica Gill, National Institutes of Health

John Glaser, Cerner

Celia Guillen, Johns Hopkins University

Bingqi Han, George Washington University

Ben Heywood, Patients Like Me

Jennifer Hinners, National Academies of Sciences, Engineering, and Medicine

Michelle Holko, Booz Allen Hamilton

Mike Huerta, National Institutes of Health

David Kennedy, University of Massachusetts Medical School

Warren Kibbe, Duke University

Tyler Kloefkorn, National Academies of Sciences, Engineering, and Medicine

Kim Lee, Research Scholar

Young Joo Lee, Johns Hopkins University

Margaret Levenstein, University of Michigan

Tianxiao Li, Yale University

Clifford Lynch, Coalition for Networked Information

Duncan MacCannell, Center for Disease Control and Prevention

Sammantha Magsino, National Academies of Sciences, Engineering, and Medicine

David Maier, Portland State University

Bilal Malik, Kashmir University

Brad Malin, Vanderbilt University Medical Center

Charles Manski, Northwestern University

Maryann Martone, University of California, San Diego

Monica McCormick, University of Delaware Library

Alexa McCray, Harvard Medical School

Michelle Meyer, Center for Translational Bioethics and Health Care Policy, Geisinger

Ilene Mizrachi, National Institutes of Health

Richard Morris, MGI

Oscar Munoz, Algoptimal, LLC

Ron Nakao, Stanford Libraries

Wendy Nilsen, National Science Foundation

Sarah Nusser, Iowa State University

Amy O’Hara, Georgetown University

Lucy Ofiesh, Center for Open Science

Page 78 Cite
Suggested Citation:"Appendix C: Registered In-Person Workshop Participants." 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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Chuba Oraka, University of the Potomac

James Ostell, National Institutes of Health

Trevor Owens, U.S. Library of Congress

Dina Paltoo, National Institutes of Health

Kim Pruitt, National Institutes of Health

Ronald Przygodzki, U.S. Department of Veterans Affairs

Morufu Raimi, Niger Delta University

Rachel Rabbitt, Cambridge Associates

Judy Ruttenberg, Association of Research Libraries

Bob Samors, Association of American Universities/Association of Public and Land-Grant Universities APARD Initiative

Michelle Schwalbe, National Academies of Sciences, Engineering, and Medicine

Shurjo Sen, National Institutes of Health

William Stead, Vanderbilt University Medical Center

James Taylor, Johns Hopkins University

Jessie Tenenbaum, Department of Health and Human Services, North Carolina

Georgia Tourassi, Oak Ridge National Laboratory

Lars Vilhuber, Cornell University

Valerie Virta, National Institutes of Health

Cynthia Hudson Vitale, Pennsylvania State University

ChiLan Vu, Eden Center

Linda Walker, National Academies of Sciences, Engineering, and Medicine

Ellen Wann, National Institutes of Health

Nick Weber, National Institutes of Health

Scott Weidman, National Academies of Sciences, Engineering, and Medicine

Ken Wiley, National Institutes of Health

KJ Wilkins, National Institutes of Health

Robert Williams, University of Tennessee Health Science Center

Tamae Wong, National Institute of Standards and Technology

Yining Xie, GS

Maryam Zaringhalam, National Institutes of Health

Page 76 Cite
Suggested Citation:"Appendix C: Registered In-Person Workshop Participants." 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 76
Page 77 Cite
Suggested Citation:"Appendix C: Registered In-Person Workshop Participants." 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 78 Cite
Suggested Citation:"Appendix C: Registered In-Person Workshop Participants." 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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