On Tuesday, 23 March 2021, the MULTI-ACT project Final Conference took place with the objective to showcase the work done and the results achieved over the last three years. The MULTI-ACT project, funded by the European Union’s Horizon 2020 Research and Innovation Programme, aimed to increase the impact of health research on people with brain disorders. The outcome of the project 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.
EHMA’s contribution to the MULTI-ACT project
As the MULTI-ACT partner, EHMA has contributed to the project implementation in several ways. EHMA has provided support to the development of guidelines for the Health Research and Innovation processes, in particular:
- the manual comprised of guidelines, recommendation and tools for Research and Innovation actors, and
- the policy brief concerning the adoption of the tools to European Research and Innovation.
EHMA has also contributed to setting up the necessary tailoring and application of the Collective Research Impact Framework (CRIF) to a multistakeholder constellation of actors, in the context of applying the methodology developed for the case of multi-sclerosis to another disease case study.
Lastly, EHMA has been involved in the development of the communications materials and the dissemination of the project’s results to relevant stakeholders.
MULTI-ACT Framework, key outcomes and principles presented at the Final Conference
The conference was opened by Dr Paola Zaratin, 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 and Dr Ralf Linder. 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.
 European Commission, DG Research and Innovation, Open Science on Responsible Research and Innovation and Guest Professor at the Technical University Darmstadt
 Head of the Department Politics and Society and Coordinator for Technology Assessment and Governance within the Fraunhofer Institute for Systems and Innovation Research ISI
 Senior Medical Director at Global Affairs and Neuroscience, Merck Serono S.A
 Research Director at the Italian Health Ministry
 Chief Research Officer at iConquerMS Network
 Senior Advisor at FIPRA, a European public affairs consultancy and the Good Governance Institute
 Chair of EPICLUSTER, a cooperative action of epilepsy research coordinated by the European Brain Research Area
 Associate Vice President, Global Initiatives at the International Progressive MS Alliance
 President of the European Charcot Foundation