Open science: The open clinical trials data journey

Clinical Trials
Volume 16 Issue 5, October 2019
https://journals.sagepub.com/toc/ctja/16/5

 

Policy
Open science: The open clinical trials data journey
Frank Rockhold, Christina Bromley, Erin K Wagner, Marc Buyse
First Published July 26, 2019; pp. 539–546
Abstract
Open data sharing and access has the potential to promote transparency and reproducibility in research, contribute to education and training, and prompt innovative secondary research. Yet, there are many reasons why researchers don’t share their data. These include, among others, time and resource constraints, patient data privacy issues, lack of access to appropriate funding, insufficient recognition of the data originators’ contribution, and the concern that commercial or academic competitors may benefit from analyses based on shared data. Nevertheless, there is a positive interest within and across the research and patient communities to create shared data resources. In this perspective, we will try to highlight the spectrum of “openness” and “data access” that exists at present and highlight the strengths and weakness of current data access platforms, present current examples of data sharing platforms, and propose guidelines to revise current data sharing practices going forward.