MULTI-ACT work presented at the project Final Conference
13 April 2021
The MULTI-ACT project worked to increase the impact of health research on people with brain diseases by creating a new model for the effective cooperation of all relevant stakeholders. The project worked with patients and patient organisations, academics, private and public stakeholders to develop brand new tools to assess the value of research. In March 2021, the MULTI-ACT project hosted its Final Conference to showcase the work done and the results achieved over the last three years. EHMA involvement in the project was principally focused on the development of guidelines for the Health Research and Innovation processes and the facilitation of stakeholder engagement.
On 23 March 2021, the MULTI-ACT project hosted its Final Conference to showcase the work done and the results achieved over the last three years. The MULTI-ACT project aimed to increase the impact of health research on people with brain disorders. The outcome is a new model, which allows for the effective cooperation of all relevant stakeholders and is applicable in defining the scope of Health Research and Innovation as well as new metrics for the evaluation of its results.
The MULTI-ACT Framework: key outcomes and principles
The conference was opened by Dr Paola Zaratin – Director of Scientific Research at the Italian Multiple Sclerosis Foundation and Coordinator of the MULTI-ACT project, who introduced the project objectives, ambitions, and outcomes. Dr Zaratin underlined the need to ensure sustainability in brain research through new multi-stakeholder and multidisciplinary managerial models in line with the Responsible Research and Innovation (RRI) approach to enable a unique health research ecosystem through patient participation. She concluded by mentioning how the MULTI-ACT project was listed as a model expected to produce institutional changes in participatory research and governance via an innovative co-accountability strategy.
The conference continued with two keynotes addressing the ‘what’, ‘how’, and ‘why’ of RRI by Dr René von Schomberg – European Commission, DG Research and Innovation, Open Science on Responsible Research and Innovation and Guest Professor at the Technical University Darmstadt – and Dr Ralf Linder – Head of the Department Politics and Society and Coordinator for Technology Assessment and Governance within the Fraunhofer Institute for Systems and Innovation Research ISI.
Dr Schomberg discussed the definition and rationale of ‘Open Science and how it is linked to the concept of Responsible Research and Innovation. He mentioned how RRI represents a new paradigm in which social systems institutionalise co-responsibility as a driving force for socially desirable innovation by giving innovation a direction and, whenever possible, shaping its characteristics. In the following keynote, Dr Ralf Linder discussed the policy developments that facilitated the emergence of RRI and its current presence at national and international policy levels. He mentioned that within R&I institutions, there is low awareness of the policy concept of RRI, but a high degree of openness to and interest in responsibility ambitions, as well as numerous RRI-related programmes in place, even if not explicitly called ‘RRI’.
Three representatives of healthcare research and innovation, Dr Elisabetta Verdun di Cantogno, Prof. Giovanni Leonardi and Dr Robert McBurney joined for a panel discussion moderated by Dr Usman Khan.
The panellists discussed the relevance of the RRI approach in their sectors. They all agreed that more work is needed to raise awareness on RRI, but that the COVID-19 pandemic facilitated a widespread recognition of its importance and implementation.
Finally, members of the project consortium presented the process used to develop the MULTI-ACT Collective Research Impact Framework (CRIF), described the components of the framework (the Governance Model, the Patient Engagement Guidelines and the Master Scorecard), and presented the legacy of the project, the MULTI-ACT Toolbox.
The closing panel with Prof. David Henshall, Mr Graham McReynolds, and Prof. Giancarlo Comi provided examples of the practical implementation of the MULTI-ACT model in multi-stakeholder initiatives: EPICLUSTER; the International Progressive MS Alliance; and the Multiple Sclerosis Care Unit (MSCU) of the European Charcot Foundation. The collaboration with the MULTI-ACT project enabled the initiatives to assess opportunities for improvement to establish and manage a structure with multi-stakeholder and accountable governance, and obtain concrete recommendations.
The conference concluded with the closing remarks of Dr Schomberg who summarised the key messages presented and shared the potential for upscaling the MULTI-ACT project.READ THE EVENT REPORT
The MULTI-ACT project is funded by the European Union’s Horizon 2020 Research and Innovation Programme under grant agreement No 787570. This page and the publications contained herein only reflects the author’s views. The European Union is not liable for any use that might be made of the information contained in this page and publications.
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