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Already in that statement, we had stressed that a vaccination campaign, however effective, would not be enough to eliminate all the damage that the ongoing pandemic could cause in the long term. Not taking into account the direct and indirect damage caused not only by the disease on the brain but also by a year of restrictions affecting mental health, would have caused even more damage.

In the meantime, however, the vaccination campaign has hit several snags, especially in Europe, which has seen a much slower roll-out that has forced Member States to change plans, adding a continued sense of uncertainty. If this can cause more damage, both to the physical and mental health of citizens who will have to continue to live with constraints to their lives, with reduced access to chronic treatment, in isolation from friends and family and more, it will leave us with more long-term consequences to mend.

It is also from these premises that the intervention of Michel Goldman, former Executive Director of the EU Innovative Medicines Initiative (IMI) and Professor Emeritus at the Université Libre de Bruxelles, published on Science|Business is founded. In this article, Professor Goldman retraces the steps of the vaccination campaign, analysing the mistakes made and proposing a new model for pandemic preparedness in Europe, comparing the situation with the US and the UK. His analysis shows that there is still time to adjust the course and spread the vaccine doses effectively, but that collaboration between the European institutions and the Member States, based on a new clear long-term plan, is essential to do this.

The article has been translated and it is now available in different languages:
English
Spanish

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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 for organisations to conduct health research with a multi-stakeholder and co-accountable approach.

EBC has been involved in a number of work packages within the MULTI-ACT project and is pleased to be leading the organisation of the Final Conference. Stay tuned for more details: registration will open at the beginning of March. For programme details, please see the programme below or visit the dedicated Event Page.

Learn more about the MULTI-ACT project by visiting: https://www.multiact.eu/, where a number of project brochures, videos, factsheets and full deliverables are shared!

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The Horizon Europe Health cluster aims at improving the understanding of health and diseases, developing innovative methodological and technological solutions to better manage health and diseases and designing sustainable approaches for the digital transformation and delivery of integrated, person-centred and equitable health and care services.

EBC generally welcomes the programme, which includes relevant areas that relate to neurological and mental diseases within several calls. However, though the document mentions “non-communicable diseases” and “mental health/illness”, there are very few references to neurological diseases and no further prioritization of brain disorders reflected within the calls, which we see as a worrying oversight.

The numbers are clear; in 2010, it was estimated that brain disorders, neurological and mental alike, affected approximately 179 million European citizens and that the costs associated with these conditions were estimated at €800 billion annually[1]. In 2016, neurological disorders were the cause of 276 million DALYs & 9 million deaths, with mental disorders adding approximately 8 million deaths annually[2]. Moreover, the consequences of brain-related conditions extend well beyond European healthcare systems and include loss of quality of life, implications for labour markets with prolonged impairment, great dependency and significantly reduced productivity.

In this regard, EBC – together with all its member organisations and societies – stressed the importance and need for improved recognition of brain research and for its support within the scope of Horizon Europe. This is a key requisite for improving human health and decreasing the overall burden of disease on European citizens.

The consultation within our wide network of brain researchers, scientists, patients and clinicians gathered feedback and suggestions for further improving the draft Work Programme, highlighting:

1. The need to address the full spectrum of brain-related diseases

Brain disorders – both neurological and mental alike— constitute a major factor, alongside cancers and cardiovascular diseases, driving the overall burden of diseases in Europe. The Health Cluster aims to solve the major health-related issues plaguing the European population, yet brain disorders remain low and insufficiently recognized throughout the draft document whilst the majority of brain conditions remain without efficient treatment and none with full cures. Although there are references to mental health/illness and disabilities in some parts of the text, only limited references to neurological disorders are made. The brain community feels strongly that the funding for brain research lacks in parity to responding to the burden of brain disorders and that neurological disorders, in particular, require increased prioritization in research funding.

2. Importance of collaboration/coordination in the brain research space

Europe-wide collaborations should be stimulated if needed and relevant, and calls for partnerships in the health research area are welcomed. To establish fruitful and effective collaboration, it is crucial to better understand the potential for collaboration and interaction, especially with civil society, policy, interest organisations and lay public for the advancement of health and neuroscience. With the project establishing a European Brain Research Area (EBRA), EBC and its member organisations and societies are working towards this important goal with the cluster calls.

3. Increased focus on supporting basic research

Although the brain community very much agrees on the importance of translational research, it is important to be careful not to focus all research priorities solely or exclusively on translation. To effectively perform translational research and because the brain is a very complex matter, the value of basic research needs to be stressed and investing resources into fundamental research continued. For many brain disorders, the field for translation is not yet ready. The transition to clinical research is often too rapid, which might lead to failure. Therefore, we emphasise the value of hypothesis driven research and related pre-clinical research, definitely with regard to innovation, and we stress the importance of understanding the biological basis of brain diseases.

4. Addressing the scope of the various topics

Work programmes have always included topics that are very broad by nature, meaning they are inclusive— which we consider to be positive – but also open up for a larger number of submissions. As a consequence, there is likely to be an increased number of rejections and the need for reviewers will continue to grow. We recommend that the scope of the various topics is reviewed and further adjusted and narrowed where needed.

Alongside these overarching points, the EBC response also included more detailed feedback on specific parts of the draft. We continue to monitor the preparations for Horizon Europe over the coming months and will also continue to take all feedback from the EBC community into account.

Full PDF of summary available here.

[1] Gustavsson A et al. Cost of disorders of the brain in Europe 2010

[2] GBD 2016 Neurology Collaborators, Estimating the true global burden of mental illness – Lancet Psychiatry 2016 & Mortality in Mental Disorders and Global Disease Burden Implications

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