NEWS     17 | 12 | 2020

MULTI-ACT contributes to the EBRA EPICLUSTER governance and patient engagement meeting

MULTI-ACT was invited to contribute to the EBRA EPICLUSTER leadership meeting on 1 December 2020 which focused on the EPICLUSTER governance, funding and patient engagement.  

The workshop brought together the leaders of various large-scale European epilepsy research projects with patient representatives and private foundations and public funding agencies from Europe and the USA. The event represents part of a strategic approach to identify funding mechanisms to deliver on the research priorities of the epilepsy community in a collective and inclusive way.

The collaboration between MULTI-ACT and the EBRA EPICLUSTER started in September 2020 with a ‘baseline’ analysis of the EPICLUSTER adherence to the MULTI-ACT governance model. This baseline analysis constitutes the first step in the flow of activities implementing the MULTI-ACT framework.

MULTI-ACT highlighted the strengths in the EPICLUSTER governance and rooms for improvement towards a stronger participatory governance and stakeholder engagement. In addition, concrete suggestions for the development of an EPICLUSTER Patient Engagement Roadmap were provided.

The EPICLUSTER leadership welcomed the recommendations. MULTI-ACT is now exploring interest and possibilities to pursue the co-creation process with the EPICLUSTER and potentially other EBRA clusters.