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Suggested Citation:"Appendix A: Workshop Agenda." 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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A

Workshop Agenda

National Academy of Sciences Building
Washington, DC

Thursday, July 11, 2019

8:30 a.m. Welcome and Introductory Remarks

David Chu, Institute for Defense Analyses, Study Committee Chair

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

Sammantha Magsino, National Academies

8:45 Sponsor Expectations

Patricia Flatley Brennan, National Library of Medicine

9:00 The Burdens and Benefits of “Long-Tail” Data Sharing

Adam Ferguson, University of California, San Francisco

10:00 Break
10:20 Panel Discussion: Researchers’ Perspectives—Managing Risks and Forecasting Costs for Long-Term Data Preservation
Suggested Citation:"Appendix A: Workshop Agenda." 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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Moderator: Margaret Levenstein, University of Michigan, Study Committee Member
Panelists:

Nuno Bandeira, University of California, San Diego

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

Georgia Tourassi, Oak Ridge National Laboratory

Robert Williams, University of Tennessee Health Science Center

11:40 Panel Discussion: Addressing Data Risks and Their Costs
Moderator: Michelle Meyer, Geisinger, Study Committee Member
Panelists:

Amy O’Hara, Georgetown University

Brad Malin, Vanderbilt University Medical Center

Trevor Owens, U.S. Library of Congress

12:40 p.m. Lunch
1:30 Breakout Sessions—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
Session 1-A
Mechanisms for Forecasting the Costs of Maintained Privacy
Session 1-B
Mechanisms for Identifying Risk and Cost Factors of Research Data in the Cloud
Session 1-C
Mechanisms for Identifying the Costs of Making Data Truly Findable
Moderator:
Michelle Meyer
Rapporteur:
Lars Vilhuber
Moderator:
Dave Maier
Rapporteur:
Ilkay Altintas
Moderator:
Bill Stead
Rapporteur:
Maggie Levenstein
2:30 Break
2:45 Report on Breakout Sessions
Suggested Citation:"Appendix A: Workshop Agenda." 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.
×
3:00 Data—What’s It Going to Cost and What’s in It for Me?
Philip Bourne, University of Virginia
4:00 Precisely Practicing Medicine from 700 Trillion Points of Data
Atul Butte, University of California, San Francisco [participating remotely]
4:45 Open Discussion—Reflections, Plans for Day 2, Coordination with Study
Alexa McCray, Harvard Medical School, Study Committee Member
5:15 Adjourn for the Day

Friday, July 12, 2019

8:30 a.m. Introductory Remarks
Alexa McCray, Harvard Medical School, Study Committee Member
8:40 Panel Discussion: Incentives, Mechanisms, and Practices for Improved Awareness of Cost Consequences in Data Decisions
Moderator: Lars Vilhuber, Cornell University, Study Committee Member
Panelists:

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

Melissa Cragin, San Diego Supercomputer Center

Wendy Nilsen, National Science Foundation

Lucy Ofiesh, Center for Open Science

10:00 Breakout Sessions—Methods to Encourage NIH-funded Researchers to Consider, Update, and Track Lifetime Data Costs
Suggested Citation:"Appendix A: Workshop Agenda." 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.
×
Session 2-A
Connecting the Dots: Planning Tools for Data Support and Research Computing
Session 2-B
Practices for Using Biomedical Data Knowledge Networks for Life-cycle Cost Forecasting and Updating
Session 2-C
Incentivizing Researchers to Determine the Costs of Interoperability
Moderator:
Ilkay Altintas
Rapporteur:
Dave Maier
Moderator:
Cliff Lynch
Rapporteur:
Lars Vilhuber
Moderator:
Bill Stead
Rapporteur:
Chuck Manski
11:00 Break
11:15 Report on Breakout Sessions
11:30 Panel Discussion: Researchers’ Perspectives—Reflections and Next Steps
Moderator: Margaret Levenstein, University of Michigan, Study Committee Member
Panelists:

Nuno Bandeira, University of California, San Diego

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

Georgia Tourassi, Oak Ridge National Laboratory

Robert Williams, University of Tennessee Health Science Center

12:20 p.m. Closing Remarks—Themes and Opportunities
Maryann Martone, University of California, San Diego; Study Committee Member
12:30 Adjourn Workshop
Suggested Citation:"Appendix A: Workshop Agenda." 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.
×
Page 63
Suggested Citation:"Appendix A: Workshop Agenda." 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.
×
Page 64
Suggested Citation:"Appendix A: Workshop Agenda." 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.
×
Page 65
Suggested Citation:"Appendix A: Workshop Agenda." 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.
×
Page 66
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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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