15-21 March was the international Brain Awareness Week in 2021, an educational initiative aiming to raise awareness of brain and research. During this week on 16 March, EBC, in partnership with EFNA & GAMIAN-Europe held a webinar on patient engagement in EU funded Brain Research Projects within research, health and policy making. Patient engagement in research involves meaningful and active collaboration with patients in the governance, priority setting, conducting and knowledge translation of research.
Paola Zaratin held a presentation on The EU-funded MULTI-ACT project, that aims to increase the impact of health research on people with brain diseases. The MULTI-ACT project will work with patients and patient organisations, academics, private and public stakeholders, to develop brand new tools to assess the value of research. To read more about MULTI-ACT you can visit their website https://www.multiact.eu/ .
One of the main goals is to try to give many opportunities for patients to advocate and to make sure that the patient view and experience are taken into consideration in projects, and to develop guidelines for patient engagement. Patients should not become scientists, but enforce the patient’s voice on what is important for them. A patient that is involved should be a full member in the project from the beginning and be included throughout the project.
Speakers from the organisers were
- Frédéric Destrebecq, Executive Director European Brain Council (EBC),
- Monica di Luca, President EBC
- Joke Jaarsma, President European Federation of Neurological Associations (EFNA)
- Hilkka Kärkkäinen, President Global Alliance of Mental Illness Advocacy Networks (GAMIAN – Europe).
In addition speakers present were
- Pierre Meulien, Executive Director Innovative Medicines Initiative (IMI) Europe’s Partnership for Health
- Irene Norstedt, Director who works at the European Commission responsible for the People Directorate within the DG for Research and Innovation Patrik Vanrunkelsven, Cebam – Belgium Center for Evidencebased Medicine
- Tomislav Sokol (HR, EPP) Member of the European Parliament.