Periodic Reporting for period 2 - MULTI-ACT (A Collective Research Impact Framework and multi-variate models to foster the true engagement of actors and stakeholders in Health Research and Innovation)
Berichtszeitraum: 2019-08-01 bis 2021-04-30
MULTI-ACT’s ultimate goal is to increase the impact of health R&I on people with brain diseases. To this aim, MULTI-ACT provides a new Collective Research Impact Framework (CRIF) which is translated into an online Toolbox and a set of guidelines to improve stakeholder co-accountability in health (and specifically, brain) research and innovation (R&I). The CRIF is thought to support Multi-Stakeholder Research Initiatives (MSRIs) in three different ways:
- EX ANTE: to set the research priorities and define the agenda of the initiative;
- ONGOING: while implementing the R&I programme or project, to monitor its performance;
- EX POST: after the completion of each programme or project, to evaluate its impact.
The CRIF is intended to provide MSRIs with the knowledge and tools they need to meet the different (and sometimes competing) needs of all the actors involved in the R&I process and improve their capacity to assess collective impact. All the knowledge generated and tools designed in the frame of the project are made available to the R&I community through a free and user-friendly digital Toolbox (accessible via the link https://toolbox.multiact.eu/) which thus constitutes the main outcome of the project.
One innovative feature of the CRIF is that it considers the mission-related dimension as one explicit driver for accountability and introduces the evaluation of the efficacy of a R&I initiative interpreted as its capacity to fulfil the shared mission as a pivotal element to promote research programmes and projects that have an impact on patients and society.
Moreover, MULTI-ACT has designed an innovative governance model for R&I which is self-explained and potentially extensible to any research domain and offers guidance and recommendations to any RFPO that is embracing a multi-stakeholder participatory and anticipatory approach.
- EX ANTE: to set the research priorities and define the agenda of the initiative;
- ONGOING: while implementing the R&I programme or project, to monitor its performance;
- EX POST: after the completion of each programme or project, to evaluate its impact.
The CRIF is intended to provide MSRIs with the knowledge and tools they need to meet the different (and sometimes competing) needs of all the actors involved in the R&I process and improve their capacity to assess collective impact. All the knowledge generated and tools designed in the frame of the project are made available to the R&I community through a free and user-friendly digital Toolbox (accessible via the link https://toolbox.multiact.eu/) which thus constitutes the main outcome of the project.
One innovative feature of the CRIF is that it considers the mission-related dimension as one explicit driver for accountability and introduces the evaluation of the efficacy of a R&I initiative interpreted as its capacity to fulfil the shared mission as a pivotal element to promote research programmes and projects that have an impact on patients and society.
Moreover, MULTI-ACT has designed an innovative governance model for R&I which is self-explained and potentially extensible to any research domain and offers guidance and recommendations to any RFPO that is embracing a multi-stakeholder participatory and anticipatory approach.
The consortium has identified 3 main phases to guide and illustrate the logical flow of the activities:
- Phase 1 “Build knowledge”: this phase built the theoretical foundation of the MULTI-ACT CRIF. Such Phase was marked by the accomplishment of:
o the Governance Model;
o the Master Scorecard, made of a selected collection of research impact indicators along 5 impact dimensions: efficacy (mission-related dimension), social impact, economic impact, excellence and patient-reported impact;
o the preliminary version of the guidelines for patient engagement (PE).
Along with these, Phase 1 saw the start of WP2, intended to produce the digital Toolbox.
In addition, WP8 (Dissemination and Exploitation) and WP9 (Project Coordination, Management and Quality Assurance) started in this Phase and run throughout the whole duration.
- Phase 2 “Apply knowledge”, during which the CRIF has been tested in a real-life setting. To this purpose a MSRI focused on Multiple Sclerosis has been selected and the CRIF has been used with the aim to validate it and check its usability, utility and easiness to adopt. The core WPs active in this Phase have been:
o WP4, that was dedicated to develop the case study in collaboration with an existing MSRI and refine the framework based upon the feedback of these early adopters;
o WP2, whereas the consortium continued to work on the development of the online MULTI-ACT toolbox;
o WP1, which validated the first version of the PE guidelines in the case study and launched a public consultation which allowed to produce the final version with a large consensus base. In the meantime, the WP1 team kept on working on the integration of the patient reported dimension indicators into the Master Scorecard.
A review of the whole CRIF was done and inputs from the case study were taken into account to improve it.
- Phase 3 “Use knowledge”, dedicated to expand the community of the potential users of the MULTI-ACT CRIF and improve the Toolbox by adding more complex and interactive functionalities. To this purpose:
o WP2 worked on the second and final release of the Toolbox,
o WP6 collaborated closely with WP2 to produce guidelines and manuals,
o WP7 set the basis for CRIF’s adoption in other brain diseases than MS with the engagement of the research clusters involved in the European Brain Research Area project,
o WP1 continued its work on the application of the PE guidelines through a pilot training module in another international MSRI, thus broadening the scope of the community of the MULTI-ACT adopters and paving the way for a series of exploitation routes beyond the end of the project including the establishment of a traiining academy.
Lastly, WP8 continued planning and delivering strategic communication and dissemination action and designing the exploitation plans. Moreover, it dealt with the IPR aspects.
- Phase 1 “Build knowledge”: this phase built the theoretical foundation of the MULTI-ACT CRIF. Such Phase was marked by the accomplishment of:
o the Governance Model;
o the Master Scorecard, made of a selected collection of research impact indicators along 5 impact dimensions: efficacy (mission-related dimension), social impact, economic impact, excellence and patient-reported impact;
o the preliminary version of the guidelines for patient engagement (PE).
Along with these, Phase 1 saw the start of WP2, intended to produce the digital Toolbox.
In addition, WP8 (Dissemination and Exploitation) and WP9 (Project Coordination, Management and Quality Assurance) started in this Phase and run throughout the whole duration.
- Phase 2 “Apply knowledge”, during which the CRIF has been tested in a real-life setting. To this purpose a MSRI focused on Multiple Sclerosis has been selected and the CRIF has been used with the aim to validate it and check its usability, utility and easiness to adopt. The core WPs active in this Phase have been:
o WP4, that was dedicated to develop the case study in collaboration with an existing MSRI and refine the framework based upon the feedback of these early adopters;
o WP2, whereas the consortium continued to work on the development of the online MULTI-ACT toolbox;
o WP1, which validated the first version of the PE guidelines in the case study and launched a public consultation which allowed to produce the final version with a large consensus base. In the meantime, the WP1 team kept on working on the integration of the patient reported dimension indicators into the Master Scorecard.
A review of the whole CRIF was done and inputs from the case study were taken into account to improve it.
- Phase 3 “Use knowledge”, dedicated to expand the community of the potential users of the MULTI-ACT CRIF and improve the Toolbox by adding more complex and interactive functionalities. To this purpose:
o WP2 worked on the second and final release of the Toolbox,
o WP6 collaborated closely with WP2 to produce guidelines and manuals,
o WP7 set the basis for CRIF’s adoption in other brain diseases than MS with the engagement of the research clusters involved in the European Brain Research Area project,
o WP1 continued its work on the application of the PE guidelines through a pilot training module in another international MSRI, thus broadening the scope of the community of the MULTI-ACT adopters and paving the way for a series of exploitation routes beyond the end of the project including the establishment of a traiining academy.
Lastly, WP8 continued planning and delivering strategic communication and dissemination action and designing the exploitation plans. Moreover, it dealt with the IPR aspects.
MULTI-ACT addresses the complexities which are inherent to the governance and collective impact assessment of MSRIs through a rigorous approach intended to enable better cooperation and co-accountability.
This result is delivered via a digital Toolbox and a set of guidelines which make the CRIF and its components accessible and usable by the MSRIs.
A NOVEL APPROACH TO STAKEHOLDER ENGAGEMENT
In health R&I the ultimate beneficiaries (i.e. the patients) are those whose needs and interests are often not appropriately taken into account. As the analysis of existing MSRIs and PE initiatives revealed, in the majority of cases PE is limited to consulting patients without granting them decision-making roles or involving them only in certain phases of the R&I path. MULTI-ACT aimed to establish and consolidate the basis for the “Science with and of patient inputs”, i.e. how the needs and claims of the patients can be better integrated in the R&I processes via their inclusion in the decision and management processes and the introduction of a specific impact patient reported dimension.
BUILDING A MULTI-ACT COMMUNITY
The CRIF, and the online Toolbox are the key outcomes of the project and represent the assets.
A community of interest around MULTI-ACT is being already established with the engagement of multiple external stakeholders (i.e. those involved in the patient engagement landscape analysis, the External Advisory Board and Patient Forum members, and the selected MSRI as case study for testing).
The Toolbox itself is designed to promote mutual learning and sharing of aggregated information on research impact and relevant good practices so to sustain the MULTI-ACT community even beyond the project’s end.
ENABLING GOVERNANCE TRANSFORMATION
One of the core components of the CRIF is the governance model. The case study represented its first case of ground implementation and an opportunity to test and improve it. Furthermore, additional "early adopters" have started using the CRIF and implementing insitutional changes in their governance such as the Progressive Multiple Sclerosis Alliance and the Patient Reported Outcomes for MS Initiative.
Governance transformation in MSRIs is a demanding process. However, the MULTI-ACT model is designed to allow flexible and gradual adoption.
Expected impacts beyond the end of the project will largely depend on the continued effort for advocacy, dissemination and further development of the Toolbox which the consortium has already strongly committed to. In this sense, MULTI-ACT offers an actionable set of tools and recommendations which is suitable for adoption in any health R&I project, programme or initiatives (e.g. Horizon Europe).
This result is delivered via a digital Toolbox and a set of guidelines which make the CRIF and its components accessible and usable by the MSRIs.
A NOVEL APPROACH TO STAKEHOLDER ENGAGEMENT
In health R&I the ultimate beneficiaries (i.e. the patients) are those whose needs and interests are often not appropriately taken into account. As the analysis of existing MSRIs and PE initiatives revealed, in the majority of cases PE is limited to consulting patients without granting them decision-making roles or involving them only in certain phases of the R&I path. MULTI-ACT aimed to establish and consolidate the basis for the “Science with and of patient inputs”, i.e. how the needs and claims of the patients can be better integrated in the R&I processes via their inclusion in the decision and management processes and the introduction of a specific impact patient reported dimension.
BUILDING A MULTI-ACT COMMUNITY
The CRIF, and the online Toolbox are the key outcomes of the project and represent the assets.
A community of interest around MULTI-ACT is being already established with the engagement of multiple external stakeholders (i.e. those involved in the patient engagement landscape analysis, the External Advisory Board and Patient Forum members, and the selected MSRI as case study for testing).
The Toolbox itself is designed to promote mutual learning and sharing of aggregated information on research impact and relevant good practices so to sustain the MULTI-ACT community even beyond the project’s end.
ENABLING GOVERNANCE TRANSFORMATION
One of the core components of the CRIF is the governance model. The case study represented its first case of ground implementation and an opportunity to test and improve it. Furthermore, additional "early adopters" have started using the CRIF and implementing insitutional changes in their governance such as the Progressive Multiple Sclerosis Alliance and the Patient Reported Outcomes for MS Initiative.
Governance transformation in MSRIs is a demanding process. However, the MULTI-ACT model is designed to allow flexible and gradual adoption.
Expected impacts beyond the end of the project will largely depend on the continued effort for advocacy, dissemination and further development of the Toolbox which the consortium has already strongly committed to. In this sense, MULTI-ACT offers an actionable set of tools and recommendations which is suitable for adoption in any health R&I project, programme or initiatives (e.g. Horizon Europe).