Neuronet hosts meetings of its Patient Privacy & Ethics and Data Sharing working groups

Neuronet is an Innovative Medicines Initiative (IMI)-funded coordination and support action, designed to support and enhance collaboration between the diverse projects in the 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.

This month, Neuronet convened online meetings of its Working Groups (WGs) on data sharing and ethics & patient privacy. On 1 March, Lennert Steukers and Jessie van Houcke (Janssen) co-moderated a meeting of the data sharing WG, attended by data experts from EMIF, EPAD, Mobilise-D, IDEAS-FAST and RADAR-AD along other IMI projects. The data sharing WG has recently finalised a deliverable report on the barriers to data sharing in the public-private partnership setting, outlining recommendations to overcome some of these obstacles. During the WG meeting, discussions focused on issues with data harmonisation and challenges posed by the varied use of common data models in different data initiatives.

On 24 March, Jean Georges moderated a meeting of the ethics & patient privacy WG, which was attended by ethics and data protection experts working on IMI neurodegeneration projects. Discussions were focused on an upcoming deliverable for the Working Group, which will analyse clauses relevant to patient privacy in informed consent forms and data management plans created by projects, aiming to identify commonalities and areas of good practice.