Planning for Long-Term Use of Biomedical Data: Proceedings of a Workshop (2020)
Chapter: Appendix A: Workshop Agenda
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 |
| 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 |
| 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 |
| 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 |
