The MULTI-ACT project aims to increase the impact of health research on people with brain diseases. It will create and implement a new model allowing for the effective cooperation of all relevant stakeholders and be applicable in defining the scope of health research and innovation as well as new metrics for the evaluation of its results.
Higher life expectancy among Europeans has caused an increase in the number of patients with brain diseases, such as Alzheimer’s, Parkinson’s, Multiple Sclerosis and many other disorders. Brain ill-health currently affects 179 million individuals in Europe and will affect one in three Europeans during their lifetime. The five most prevalent brain diseases in Europe are anxiety disorders, migraine, mood disorders, addiction and dementia. It is therefore of utmost importance to develop a research model that produces results that have a real impact on the lives of these patients and their caregivers.
“Scientific research is crucial in taming the effects of these diseases; the time has come to make the research more effective, inclusive and to take on board all the stakeholders involved” says Paola Zaratin, Director of the Italian MS Society Foundation and Coordinator of the MULTI-ACT project. “Beginning with patients, their needs and experiences”. So far, most multi-stakeholder initiatives have faltered, in most cases due to the lack of appropriate infrastructure and shared means of aligning efforts and results. This is why the MULTI-ACT project will work with patient associations, academics, private stakeholders and the public to develop brand new tools to assess the value of research from four different aspects: stakeholder agenda, scientific excellence, economic efficiency and social impact.
“An effective organizational structure, clear engagement tools and goals are key strategic elements for any successful multi-stakeholder initiative” adds Riccardo Giovannini, Partner of the EY’s Italian Climate Change and Sustainability team that will support the design and implementation of the MULTI-ACT stakeholder engagement policies and initiatives. “This will be instrumental in forging a common research agenda and best practices to share with research institutions in the EU and beyond,” says Frédéric Destrebecq, Executive Director of the European Brain Council (EBC), a MULTI-ACT project consortium partner.
The MULTI-ACT project will last 3 years with a budget of €3.5 million. It brings together leading European society and patient organizations, research and higher education institutions, governmental organizations and technological organizations. MULTI-ACT will be coordinated by the Italian Multiple Sclerosis Society Foundation (FISM), as member of the International MS Federation (MSIF), a “boundary organization” between science and patients.
This project has received funding from the European Union’s Horizon 2020 Research and Innovation Programme under the Grant Agreement No. 787570.
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