Reflections on Sharing Clinical Trial Data

On November 18 and 19, 2019, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop in Washington, DC, titled Sharing Clinical Trial Data: Challenges and a Way Forward. The workshop followed the release of the 2015 Institute of Medicine (IOM) consensus study report Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk, and was designed to examine the current state of clinical trial data sharing and reuse and to consider ways in which policy, technology, incentives, and governance could be leveraged to further encourage and enhance data sharing. This publication summarizes the presentations and discussions from the workshop.

• Front Matter
• 1 Introduction
• 2 Perspectives on Current Data-Sharing Policies in Practice
• 3 Data-Sharing Platforms
• 4 Striking a Balance Between Benefit/Value and Risk/Cost
• 5 Data Interoperability and Platform Usability
• 6 Infrastructure Sustainability
• 7 Challenges and Disincentives for Sharing and Reuse of Data
• 8 Finding Value in Sharing Clinical Trial Data: Overcoming Usability and Sustainability Challenges
• 9 Looking Forward: Incentivizing Data Sharing and Reuse
• Appendix A: References
• Appendix B: Workshop Agenda