On 26 February, the Neuronet Working Group on Data Sharing held a meeting at the Johnson & Johnson headquarters in Diegem, Brussels. The Neuronet Working Groups (WGs) are cross-project spaces for experts to discuss common issues, priorities and opportunities for synergy and collaboration, providing Neuronet with expert advice on four identified areas of interest: data sharing, HTA/regulatory interactions, patient privacy & ethics, and sustainability. As such, the WGs make an important contribution to Neuronet’s goal of compiling and leveraging the expert knowledge that is presently scattered across the different neurodegeneration projects in the Innovative Medicines Initiative (IMI) portfolio.
Lennert Steukers, the Project Leader for Neuronet, kicked off the WG meeting with a brief overview of the structure, function and aims of Neuronet. Focusing on the WGs, he highlighted the importance of collating best practice in data sharing from the different IMI projects on neurodegeneration, as well as working together to identify – and overcome – common challenges. Presentations were then given by three experts on data sharing, starting with Rodrigo Barnes of Aridhia DRE. Aridhia DRE is a Scottish clinical informatics company which is providing the EPAD project with its data and analytics platform. Rodrigo identified some common data sharing challenges for consortium projects that involve clinical research studies, including pseudonymisation, audits and data protection issues. Next, Nigel Hughes from Janssen Clinical Innovation (where he is Scientific Director for Patient Data in Research) spoke about his experiences of data sharing in the EMIF and EHDEN projects. A focus of both of these IMI projects was the harmonisation and integration of disparate data sources, and Nigel discussed some of the regulatory, ethical and technical challenges that can arise in data-focused projects such as these. Finally, Martin Hofmann-Apitius of the AETIONOMY project presented several examples of clinical research data sharing, also suggesting some practical solutions to maximise the use and re-use of these valuable datasets.
Going forwards, the WG will focus on developing specific guidance to aid projects on data sharing policies and tools, incentives, value propositions and infrastructural solutions, among others. This will help facilitate the sharing of and access to data, biological tools and other materials amongst IMI projects, as well as with other interested researchers at a European and global level.
