User-driven Governance

Pillar 2 will develop three parallel and complementary axes of work, all three governed by consistent quality, regulations and compliance with agreed standards requirements. Moreover, all axes will be driven by research and clinical user community, ensuring that Virtual Platform is built for and adopted by this community.

A unifying coordination effort will be provided that places users, not least ERNs, in a central strategic position in Pillar 2 by providing the means to understand end-users’ needs, by optimising the activities and the quality of work conducted by WP11 (about metadata and centralised data resources), WP12 (about record level and federated solutions), and WP13 (about filling gaps in data and analysis methods regarding heterogeneous RD data).

A yearly strategic plan targeting real-world needs will be iteratively defined guiding Pillar 2 activities to meet real-world needs, together with end-users and participant resources. A quality management plan, GDPR compliance rules and VP sustainability scenarios will be developed.