Neuronet Working Groups emphasise the importance of effective collaboration to overcome obstacles linked to patient privacy and data sharing

As a coordination and support action, Neuronet has been designed to enhance the impact and outputs of the diverse projects in the Innovative Medicines Initiative (IMI) neurodegeneration portfolio. In 2019, Neuronet launched four Working Groups, cross-project spaces for experts to discuss common issues, priorities and opportunities for synergy and collaboration. Each Neuronet Working Group is focused on a particular area of concern for IMI Neurodegeneration projects: data sharing, ethics & patient privacy, sustainability and regulatory/HTA interactions. In June, Neuronet convened online meetings of its Working Groups (WGs) on data sharing and ethics & patient privacy.

Public-private partnerships and ELSI

Failure to adequately protect health data against loss or misuse can expose research participants and data subjects to substantial ethical risks. In addition, the development of new technologies and methods for disease diagnosis have ethical and social risks that need to be addressed before being used in the clinical setting. As such, work on ethical, legal and social implications (ELSI) forms an integral part of most projects in the IMI neurodegeneration portfolio.

On 11 June, Jean Georges (Alzheimer Europe) moderated a meeting of the ethics & patient privacy WG, which was attended by ethics and data protection experts working on the EPAD, AMYPAD, RADAR-AD, MOPEAD, EMIF and AETIONOMY projects, among others. Together, the WG members are working to develop guidance and advice on key ELSI topics for public-private partnership projects, based on a wealth of experience accumulated through working on these IMI neurodegeneration projects. Discussions during the WG meeting were focused on the ways in which ELSI issues are identified and addressed in public-private partnership projects.  Attendees emphasised the importance of meaningful engagement between industry and academic partners, and the value of bringing practical experiences from industry together with academic perspectives on ELSI. Developing new pathways for enhanced collaboration between industry and academic partners on ELSI topics was identified as an important priority for the WG, and one that could help increase the impact and sustainability of ELSI outputs arising from IMI projects.

From data sharing to data collaboration

The benefits of sharing data have long been recognised by stakeholders from across the research spectrum, who all agree that data sharing can accelerate and advance neurodegenerative disease research. However, data sharing is rarely simple: data protection requirements, technical complexities, contractual obstacles and motivational barriers often impede data sharing in practice.

On 17 June, Lennert Steukers (Neuronet’s Project Leader) and Michaela Rinaldi (Modis on behalf of Janssen) co-moderated a meeting of the data sharing WG, attended by data experts from EMIF, EPAD, Mobilise-D, IDEA-FAST and RADAR-AD along other IMI projects. Recent efforts of the data sharing WG have focused on collating information on the barriers to data sharing in the public-private partnership setting, and outlining recommendations to overcome some of these obstacles, based on personal experiences from IMI project work. During the WG meeting, experts described some of the complexities involved in negotiating data sharing agreements and frameworks that comply with data protection regulations and intellectual property requirements.  Attendees highlighted the potential for data collaboration, where data insights are shared in a decentralised way, and allowing for sensitive data to remain behind firewalls.

The WGs will meet again in September, working towards the development of deliverable reports that compile and share learnings on their respective focus areas.

Find out more about the Neuronet WGs: