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.Table of ContentsFront Matter1 Introduction2 Perspectives on Current Data-Sharing Policies in Practice3 Data-Sharing Platforms4 Striking a Balance Between Benefit/Value and Risk/Cost5 Data Interoperability and Platform Usability6 Infrastructure Sustainability7 Challenges and Disincentives for Sharing and Reuse of Data8 Finding Value in Sharing Clinical Trial Data: OvercomingUsability and Sustainability Challenges9 Looking Forward: Incentivizing Data Sharing and ReuseAppendix A: ReferencesAppendix B: Workshop Agenda