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.

Contents

• The National Academies of SCIENCES • ENGINEERING • MEDICINE
• COMMITTEE ON THE WORKSHOP 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
• BOARD ON LIFE SCIENCES
• BOARD ON RESEARCH DATA AND INFORMATION
• Acknowledgment of Reviewers
• 1. Introduction
  • WORKSHOP OVERVIEW
  • OPENING REMARKS
    David Chu and Patricia Flatley Brennan.
• 2. Data Sharing and Data Preservation
  • THE BURDENS AND BENEFITS OF “LONG-TAIL” DATA SHARING
    Adam Ferguson.
  • PANEL DISCUSSION: RESEARCHERS' PERSPECTIVES ON MANAGING RISKS AND FORECASTING COSTS FOR LONG-TERM DATA PRESERVATION
    Margaret Levenstein, Moderator, Nuno Bandeira, Jessie Tenenbaum, Georgia (Gina) Tourassi, and Robert Williams.
• 3. Data Risks and Costs
  • PANEL DISCUSSION: ADDRESSING DATA RISKS AND THEIR COSTS
    Michelle Meyer, Moderator, Amy O'Hara, Brad Malin, and Trevor Owens.
  • 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?
    Philip Bourne.
  • PRECISELY PRACTICING MEDICINE FROM 700 TRILLION POINTS OF DATA
    Atul Butte.
• 5. Lifetime Data Costs
  • PANEL DISCUSSION: INCENTIVES, MECHANISMS, AND PRACTICES FOR IMPROVED AWARENESS OF COST CONSEQUENCES IN DATA DECISIONS
    Lars Vilhuber, Moderator, John Chodacki, Melissa Cragin, Wendy Nilsen, and Lucy Ofiesh.
  • SUMMARIES OF SMALL-GROUP DISCUSSIONS
• 6. Reflections and Next Steps
  • PANEL DISCUSSION: RESEARCHERS' PERSPECTIVES ON NEXT STEPS
    Margaret Levenstein, Moderator, Nuno Bandeira, Jessie Tenenbaum, Georgia (Gina) Tourassi, and Robert Williams.
  • THEMES AND OPPORTUNITIES
• References
• Appendixes
  • A. Workshop Agenda
  • B. Biographical Sketches of Committee
  • C. Registered In-Person Workshop Participants

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.

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.

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