12 May 2021

The MULTI-ACT Project concludes today with the official launch of the MULTI-ACT Digital Toolbox, a web-based tool enabling easy navigation through the MULTI-ACT knowledge base. The toolbox, which is one of the project deliverables, is designed for use by organisations willing to conduct health research with a multi-stakeholder and co-accountable approach.

The MULTI-ACT project, funded under the European Union Horizon 2020 Programme, kicked off in May 2018 with the aim to increase the positive impact on people living with brain disorders. It brought together leading European society and patient organisations, research and higher education institutions, governmental organisations and technological organisations. The project was coordinated by the Italian Multiple Sclerosis Society Foundation (FISM), as a boundary organisation between Science and Society.

Over the course of three years, the project consortium has developed and implemented a Collective Research Impact Framework (CRIF). The CRIF offers a more participatory and realistic evaluation of the health Research and Innovation (R&I) impact of multi-stakeholder initiatives. 

The CRIF components, namely the Baseline Analysis, Governance Criteria, Materiality Analysis, Patient Engagement Guidelines, and Master Scorecard are operationalised in the MULTI-ACT Digital Toolbox. The toolbox is user-friendly and contains explanations and recommendations at each stage. Its end goal is to facilitate the application of the CRIF and stakeholder engagement. 

The MULTI-ACT Digital Toolbox was first presented to the MULTI-ACT project participants during an online demo session organised by the European Health Management Association (EHMA) in March 2021. The demo event brought together stakeholders and potential end-users with the objective to gather feedback on the toolbox itself.

Following the event, Arlene Bierman from the National Alzheimer’s Plan Act (NAPA) in the USA said: “In the US, I serve on the National Alzheimer’s Plan Act (NAPA) Committee. They will be very interested in this work which I will share with them.”

On the same occasion, Dr Kovacs Eszter from the Semmelweis University, Hungary commented: “[The MULTI-ACT Digital Toolbox] seems like a very comprehensive and useful tool, and I would be glad to spend some more time to explore each of its components.”

The Digital Toolbox was further presented at the MULTI-ACT Final Conference, held on 23 March 2021. The full Conference report is available through the MULTI-ACT website. The toolbox introduction video was also launched on this occasion:

The Digital Toolbox has been designed and developed in the context of the H2020 MULTI-ACT project, operationalizing the defined MULTI-ACT CRIF framework, guidelines and associated methods in interactive, intuitive and user-friendly ways, among other offered Web 2.0 features and functionalities, such as online communities support, content uploading and annotation, initiative profiling, etc.

The toolbox is freely accessible through the official website of the MULTI-ACT project: toolbox.multiact.eu. All of its functionalities are available free of charge upon registration. It should be used in conjunction with the CRIF Manual for Research & Innovation actors, which is integrated into the toolbox.

The MULTI-ACT Framework, key outcomes and principles were presented today during the project’s Final Conference.

High-level speakers introduced the concept of Responsible Research and Innovation (RRI) and its relevance in the health sector, particularly in the context of emergencies such as the COVID-19 pandemic.

The consortium presented a governance model, a roadmap for patient engagement and impact indicators along five dimensions to foster stakeholder engagement in health research and innovation.

Furthermore, the MULTI-ACT online toolbox was briefly presented and a detailed user guidelines video was launched:

The toolbox will soon be available to the public.

Lastly, users of the MULTI-ACT CRIF were interviewed and presented honest and inspiring testimonials of their experience with MULTI-ACT and how it has helped their multi-stakeholder initiatives.

The full event report is available here. Visit our Twitter feed for live coverage from the event.

The MULTI-ACT Model: The Path Forward for Participatory Governance in Health Research and Innovation

23 March 2021 (14:00-17:00 CET)

After years of work, the outcomes of the MULTI-ACT project will be presented at the Final Conference, “The MULTI-ACT model: the path forward for participatory governance in health research and innovation”, to be held virtually on 23 March 2021.

The EU-funded MULTI-ACT project aims to increase the impact of health research on people with brain diseases. It has worked to create and implement a new model allowing for the effective cooperation of all relevant stakeholders, which will be applicable in defining the scope of health research as well as new metrics for the evaluation of its results. The MULTI-ACT project has worked with patients and patient organizations, academics, private and public stakeholders to develop brand new tools to assess the value of research.

Among these tools, the consortium has produced a governance model, a roadmap for patient engagement and impact indicators along five dimensions to foster stakeholder engagement in health research and innovation, which will be presented during the conference. Furthermore, the MULTI-ACT online toolbox will be presented and available to organisations willing to conduct health research with a multi-stakeholder and co-accountable approach.

Learn more about MULTI-ACT by digging deeper through this website, where you can find project brochures and factsheetsvideosfull deliverables and more!

Watch conference teaser video below:

MULTI-ACT Final Conference

The MULTI-ACT Model: The Path Forward for Participatory Governance in Health Research and Innovation

23 March 2021 (14:00-17:00 CET)

After years of work, the outcomes of the MULTI-ACT project will be presented at the Final Conference, “The MULTI-ACT model: the path forward for participatory governance in health research and innovation”, to be held virtually on 23 March 2021.

The EU-funded MULTI-ACT project aims to increase the impact of health research on people with brain diseases. It has worked to create and implement a new model allowing for the effective cooperation of all relevant stakeholders, which will be applicable in defining the scope of health research as well as new metrics for the evaluation of its results. The MULTI-ACT project has worked with patients and patient organizations, academics, private and public stakeholders to develop brand new tools to assess the value of research.

Among these tools, the consortium has produced a governance model, a roadmap for patient engagement and impact indicators along five dimensions to foster stakeholder engagement in health research and innovation, which will be presented during the conference. Furthermore, the MULTI-ACT online toolbox will be presented and available to organisations willing to conduct health research with a multi-stakeholder and co-accountable approach.

Stay tuned for more details: registration will open at the beginning of March. For programme details, visit the Final Conference section of this website or our dedicated Event Page.

Learn more about MULTI-ACT by digging deeper through this website, where you can find project brochures and factsheets, videos, full deliverables and more!

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.

The MULTI-ACT consortium is pleased to share with you a series of fact sheets, breaking down the most important aspects of three key pillars of the project: the MULTI-ACT Patient Engagement Guidelines, the MULTI-ACT Master Scorecard and the MULTI-ACT Governance Model.

The MULTI-ACT Patient Engagement Guidelines provide a roadmap to constructively capture, understand and draw on the knowledge patients acquire through their experience with and of the disease (‘experiential knowledge’) for co-creation purposes. Patient engagement actions are enablers for multi-stakeholder research initiatives that aim to have a more participatory governance and effective methods for stakeholder engagements, in line with the MULTI-ACT Governance Model and related criteria. Learn more:

The MULTI-ACT Master Scorecard is one of the core components of the MULTI-ACT Collective Research Impact Framework (CRIF). The scorecard has been developed to measure the co-accountability – multiple interests – of a multi- stakeholder research organisation for a given mission and agenda. Learn more:

The MULTI-ACT Governance Model is the result of a co-design process carried out by the MULTI-ACT project partners. It is a tool to facilitate and improve the efficiency of the implementation of multi-stakeholder engagement and collaborative initiatives in health research. Learn more: