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.
On 17 December, Neuronet hosted an online meeting of its WG on data sharing, moderated by Lennert Steukers, the Project Leader for Neuronet. Lennert kicked off the WG meeting with a brief overview of recent Neuronet activities, including the 2020 Public Event held as part of the 30th Alzheimer Europe conference. Next, Ghislaine van Thiel, Ethicist and researcher at the Julius Center of UMC Utrecht, delivered a presentation describing the work of the Big Data@Heart IMI project on ethical, legal and governance aspects of Big Data research. In particular, she highlighted the complexity and heterogeneity of data governance frameworks between institutions and clinical centers, and the difficulty of developing “one size fits all” solutions for data protection. It was also evident that many companies that collect data from customers or clients were unaware of the GDPR audit process to protect data, and therefore were not complying with data protection laws. This made it more evident that the GDPR audit process, which is possible to read-on here, and many other key challenges are all factors that need to be addressed in the upcoming months and years.
The main part of the WG meeting was focused on discussing different challenges frequently encountered in data sharing, in particular sociotechnical obstacles, legal complexities and organizational challenges. Representatives from several IMI projects, including Nigel Hughes (Janssen; EHDEN and EMIF), Rodrigo Barnes (Aridhia; EPAD), Antony Brookes (University of Leicester; EPAD) and Niamh Connolly (RCSI Dublin; PD-Mitoquant) discussed their experiences of these challenges, also identifying potential tools and frameworks that could help overcome issues that impede effective health data sharing. Future WG meetings will focus on identifying concrete examples of best practice, working towards the development of a white paper on data sharing in neurodegenerative disease research.