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Brain Awareness Week 2021

EBC in partnership with EFNA & GAMIAN-Europe

Patient Engagement in EU-Funded Brain Research Projects

Digital Event – 16 March, 12:30-14:00

Patient engagement in research is an approach that involves meaningful and active collaboration with patients in the governance, priority setting, conducting and knowledge translation of research. While patient engagement is becoming increasingly popular and vital prerequisite in research projects, many researchers are still unsure or hesitant in the involvement of patients in their work and why such engagement is of value. The process is unclear to many and how to fully involve patients can be unclear. However, many patients are keen to be part of research – “nothing about us without us” –arguing that no research can be fully done without direct insight from the people actually living with these conditions every day.

For some time now, the European Commission, through its research programmes and related initiatives, has been increasing its encouragement of involving patients in research, particularly within the projects it funds. The Responsible Research and Innovation (RRI) approach has been highlighted throughout the objectives of the EU Horizon 2020 Programme. In health research this means to put the expectations of patients and society at the heart of research programs. European initiatives such as the Innovative Medicines Initiative (IMI) have spearheaded the growth of involving patients in European research, encouraging patient involvement in their activities and project, and involving patients as speakers and panellists in their events and consultations. Furthermore, H2020-funded projects such as MULTI-ACT were launched with the aim to increase the impact of health research on people with brain diseases and to create and implement a new model allowing for the effective cooperation of all relevant stakeholders.

However, most patients and patient representatives still feel like not enough support is given to have their voices fully heard in research—requests and demand for involving patients is growing but a pool of “patient experts” is still lacking. The discussion needs to shift from “we need to show that patients are on board” to “how can we best involve patients and why/how are we involving them to the full benefit for the research conducted”. “What can be done concretely in EU funded health research projects to enforce patient engagement”? This needs to be more than a “box ticking exercise”.

This Brain Awareness Week looks to explore the current state of patient engagement in EU-funded Brain Research projects, looking at IMI and MULTI-ACT as concrete examples and solutions and analysing in discussion with key officials what has been done and what can still be done in order to guarantee change.

See programme and concept note included below. Registration is now open HERE.

Download the programme HERE.

The post Patient Engagement in EU-Funded Brain Research Projects (EBC-EFNA-GAMIAN-Europe Brain Awareness Week Event) appeared first on European Brain Council (EBC).

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

The post What can we learn from the vaccination campaign? appeared first on European Brain Council (EBC).

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 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 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!

The post MULTI-ACT Final Conference: “The MULTI-ACT Model: The Path Forward for Participatory Governance in Health Research and Innovation” appeared first on European Brain Council (EBC).

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!

The post MULTI-ACT project launches Save the Date for Final Conference appeared first on European Brain Council (EBC).