MULTI-ACT

MULTI-ACT an example of a project that aimed to strengthen health research systems through stakeholder engagement and a commitment to interdisciplinary work. MULTI-ACT has the potential to have a significant impact on improving health equity and patient outcomes. To realise this potential, the project must overcome a lack of political will, further apply the project’s digital toolbox and expand the scope of the project’s dissemination.

Aims of the project

Despite technical improvement to our understanding of brain disorders, translating such advances into improved patient outcomes remains a challenge. Research into brain disorders often takes the form of complex Multi-Stakeholder Research Initiatives (MSRIs) which bring together different partners from government, civil society, and the private sector to solve common problems.[1] In MSRIs, partners often struggle to find common grounds for collaboration. In response to these challenges MULTI-ACT aimed to develop and demonstrate the efficacy of a collective research impact framework to improve patient co-accountability in MSRIs on brain disorders. MULTI-ACT’s project coordinator was Dr Paola Zaratin from the Italian Multiple-Sclerosis (MS) Society, a patient organisation, which was supported by a consortium of 11 multidisciplinary partners.

Project achievements

MULTI-ACT produced a number of tools for research, practice, and engagement. First among these was a user-friendly digital toolbox that contained the tools and knowledge generated by the project. The digital toolbox aimed to guide potential MSRIs though the different stages of a Collective Research Impact Framework (CRIF), a set of flexible, ready-made tools to manage the demands of different stakeholders, while helping them to assess collective impact.^[2] This CRIF included: governance criteria, guidelines for capturing patients’ ‘experiential knowledge’, a master score card for assessing research impact, and a set of user guidelines. These tools have already been adopted by a number of organisations in the brain research space including: the International Progressive MS Alliance, the European Charcot Foundation, the European Charcot Foundation’s Patient Reported Outcomes for Multiple Sclerosis (PROMS) Initiative, and the Italian MS Society.

MULTI-ACT also contributed to the creation of a community of informed stakeholders, while also spreading its knowledge and understanding of best practices to its target users. MULTI-ACT did this by engaging with key stakeholders throughout the project, as it developed its toolbox for research, practice, and engagement.

MULTI-ACT produced several knowledge related outputs. These included the publication of articles in: Nature,[3] Lancet Neurology,[4] a special issue of the journal of Sustainability Accounting, Management and Policy,[5] Current Opinion in Neurology,[6] and a report for the US-based National Informal STEM Education Network.[7] MULTI-ACT also developed a Collective Materiality Analysis as a new methodological tool for ensuring the ongoing involvement of stakeholders in MSRIs by identifying where they would like to see their desired ‘return on investment’ from a project.

The project also aimed to influence policy makers. To this end, MULTI-ACT produced a White Paper addressing key recommendations in the short-, medium-, and long-term,^[8] and a short Policy Brief detailing the key facts of the project.^[9]

MULTI-ACT’s communication strategy targeted media and the professional networks of the consortium partners.  In terms of media-based targeting, MULTI-ACT disseminated its work on television, blog posts, press releases and biannual newsletters. The project also hosted a final virtual conference that brought together stakeholders and project partners. MULTI-ACT also used its partners’ professional networks to engage its partners and relevant stakeholders. It did this by creating project advisory boards where, for example, policy makers and the pharmaceutical industry were represented.

Project impacts, barriers and enablers

While the project only recently concluded, making it difficult to chart tangible impacts, early feedback has been promising. The project’s external reviewer, an expert in the field of Responsible R&I, made clear in their review of MULTI-ACT’s toolbox that it is applicable beyond the research area of brain disorders.[10] While multidisciplinarity was a challenge to the project, MULTI-ACT’s impact potential has also been enabled by its serious commitment to multidisciplinarity – the consortium’s complementary skillsets played an important role in achieving the projects outputs and outcomes. MULTI-ACT’s dissemination strategy, which mobilised different communication channels and its partners’ networks, proved effective in disseminating the project’s outputs to the academic community, as well as policy makers at the national and international levels.

However, while MULTI-ACT’s dissemination strategy was, overall, strong, in retrospect, one member of the project team thought that it was not pitching its findings widely enough, as evidenced by the comments of the project’s external reviewer. One of the researchers also noted that a key barrier to fully developing MULTI-ACT’s policy potential was a lack of political will, as seen from the absence of a clear exploitation plan among policy makers.

[1] ‘MULTI-ACT – What are multi-stakeholder research initiatives and why do we need them?’. Accessed 10^th November 2021: https://www.multiact.eu/2019/01/18/multi-act-blog-1/

[2] ‘Cordis – Reporting – A Collective Research Impact Framework and multi-variate models to foster the true engagement of actors and stakeholders in Health Research and Innovation’, Accessed 22nd October 2021: https://cordis.europa.eu/project/id/787570/results.

[3] Zaratin, P and Salvetti, M. 2018. ‘Evaluation woes: start right’, Nature (559)7714, doi: https://doi.org/10.1038/d41586-018-05750-5

[4] ‘Patient Reported Outcomes in the Spotlight’, 2019, The Lancet Neurology, Editorial Volume (18)11, doi: https://www.sciencedirect.com/science/article/abs/pii/S1474442219303576?via%3Dihub

[5] Andreaus, M, Larrinaga, C and Vinnari, Ejia. 2020. ‘The (un)sustainability of impact factor. How can we make research more accountable?’, Emerald Publishing, Accessed 2^nd November 2021: https://www.emeraldgrouppublishing.com/calls-for-papers/unsustainability-impact-factor-how-can-we-make-research-more-accountable

[6] Brichetto, G and Zaratin, P. 2020. ‘Measuring outcomes that matter most to people with multiple sclerosis: the role of patient-reported outcomes’. Current Opinion in Neurology, 33(3), doi: file:///C:/Users/enielsen/Downloads/Attachment_0%20(37).pdf

[7] Das, J and Porcello, D. 2019. ‘A Global Landscape of Neuroscience Public Engagement Efforts and the Potential Nexus of Neuroethics’. NISE: National Informal STEM Education Network, Changing Brains, accessible at: https://www.multiact.eu/wp-content/uploads/2019/10/public-engagement-and-neuroethics-landscape-report.pdf

[8] ‘MULTI-ACT – White Paper for Innovative routes for Patient Engagement’, Accessed 26^th October 2021: https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e5d23154b1&appId=PPGMS

[9] ‘MULTI-ACT – Strengthening the impact of health research on people with brain disease – Policy Brief’, Accessed 26^th October 2021: https://www.multiact.eu/wp-content/uploads/2019/05/MULTI-ACT-Policy-Brief-Final.pdf

[10] Robinson, D, K, R. 2021. General Project Review Consolidated Report. European Commission: European Research Executive Agency, Ref. Ares(2021)4785130 – 26/07/2021, p.2.