EBRA Archives – European Brain Council (EBC)

European Brain Research Area Final Conference

admin_ebc — Tue, 11 Oct 2022 08:00:00 +0000

The European Brain Research Area (EBRA) project partners are delighted to invite you to the upcoming Final Conference, which will take place on 11 October 2022 in Brussels, Belgium.

Four years have already passed and plenty of work is to be presented this coming October, including the EBRA Landscape Analysis, the Shared European Brain Research Agenda (SEBRA) as well as the work undertaken by the six EBRA Clusters. The event will be an occasion to bring the wider brain research community and key players together, to discuss key aims of the project: the current state of brain research in Europe, increased patient engagement and public awareness, research infrastructures and data sharing and the future potentials and need for a brain health partnership going forward.

Collaboration and cooperation in the brain research area remain more important than ever and the EBRA Final Conference will be a major milestone to ensure unification and commitment to the future of brain research in Europe.

The EBRA Final Conference will be held in conjunction with the Brain Innovation Days, taking place on 11-12 October 2022 in Brussels.

Discover the programme and register here.

The post European Brain Research Area Final Conference appeared first on European Brain Council (EBC).

Brain Innovation Days: Connecting Brains

Dominika Suchonova — Tue, 11 Oct 2022 00:00:00 +0000

This year’s Brain Innovation Days event will centre around Connecting Brains; bringing together the current and future generations of brain research and innovation.

The focus of the 2022 event will be to enable space and opportunity for open discussion and showcasing, prioritising matchmaking and networking within the community, particularly of stakeholders who may not have the opportunity to connect in their day-to-day.

Pre-event matchmaking would be encouraged through a dedicated platform in order to facilitate interaction on the day and programme details will be shared between March and May 2022 in order to attract a wider audience and kickstart networking opportunities.

The 2nd Brain Innovation Days Pitch Competition will take place on the day, with five pre-selected finalists battling live for the jury and public prizes for Best Pitch

An Innovation Corner will be set up for companies to showcase their tangible tools and devices and for researchers to present posters, an area that will be open on the 11th in the afternoon during the EBRA Final Conference and throughout the day on the 12th and host a guided tour during the Networking Reception on 12 October.

The day will host a series of How-To sessions focused on business and networking skills, a high-level investor panel, a policy-focused roundtable discussion on research funding, countless networking opportunities (both in groups and one-on-one) and exciting Brain Talks.

A pre-event, 12-episode season 2 of the Brain Talks podcast series will follow the chosen theme of the 2022 BIDs, also involving members of EBC, pulling in the perspective of scientists, clinicians, patients and more.

Discover the programme and register here!

The post Brain Innovation Days: Connecting Brains appeared first on European Brain Council (EBC).

EBC and EBRAINS launch Save the Date for European Brain Summit, held in conjunction with the Brain Innovation Days and HBP Summit

Stephanie Kramer — Thu, 29 Jul 2021 11:33:01 +0000

The European Brain Council and the EBRAINS Research Infrastructure are pleased to invite you to the first European Brain Summit, a joint event that will take place on 12^th October 2021 in Brussels from 13:30 to 18:00, in conjunction with the Brain Innovation Days and Human Brain Project Summit.

This will be a unique opportunity to explore the challenge of understanding the brain and the role that Europe should continue to play in this endeavour. High-level speakers and experts will present their vision of the future of European brain health research in the context of the European Health Union. New innovative solutions and technological advancements will be highlighted.

Our objective is to create a genuine momentum for scientific breakthroughs and policy advancement to the benefit of European citizens.

Mark your agenda now for this unique meeting to discuss ways of advancing brain research through scientific collaborations, digital innovation, data management and patient centricity. Registration will open soon.

The post EBC and EBRAINS launch Save the Date for European Brain Summit, held in conjunction with the Brain Innovation Days and HBP Summit appeared first on European Brain Council (EBC).

Event Report: “Patient Engagement in EU-Funded Brain Research Projects”

Stephanie Kramer — Fri, 26 Mar 2021 10:37:36 +0000

On 16 March 2021, on the occasion of Brain Awareness Week 2021, the European Brain Council, in partnership with the European Federation of Neurological Associations & GAMIAN-Europe, held an event on Patient Engagement in EU-Funded Brain Research Projects.

The event aimed to shed light on the current state of patient engagement in EU-funded brain research projects, exploring how patients have been involved to date, their experiences in this involvement, the challenges continued to be faced, examples of patient-involved projects and initiatives and looking at what can be done to improve engagement.

EBC, EFNA and GAMIAN-Europe were pleased to welcome over 100 participants. The event was opened by Prof Monica Di Luca, President of EBC, who – speaking as a basic scientist – highlighted the fundamental importance of patient involvement in research in order to gain knowledge from the lived experience of patients to boost research findings to work towards understanding and discovering proper treatment and cures for brain disorders. Patient engagement is a central force in many EBC activities, particularly in the European Brain Research Area (EBRA) project and in the EBC Policy Roadmap ‘Brain Health in Europe: Fostering Innovation, Improving Outcomes’ released on the day.

From here the programme shifted to setting the scene, with Irene Norstedt, Director, People Directorate, DG Research and Innovation, European Commission; Erik Van der Eycken, EU Research Project Officer, GAMIAN-Europe presenting their views on the challenges of engaging patients in research; and Joke Jaarsma, President of European Federation of Neurological Associations (EFNA) President & Treasurer of EBC.

One of the key issues to put on the table is the understanding of the role and expectation [for patients in research]. It is very clear that it has to be a real participation and not a token participation. This is something that we’ve had for many years in the European Commission with projects often having a requirement to have patient participation in research that we are funding and what we really need to highlight is the importance to make sure that patients and/or patient representatives are not put there as tokens but really are given an active role.

Irene Norstedt, Director, People Directorate, DG Research and Innovation, European Commission

Communication is a very important aspect and key challenge in patient involvement. Overcoming language barriers is not only understanding the various European languages but also the type of language that you have between the researchers and the patients/patient representatives. In my experience, in different projects we talk a very different language. This is not only between patients and researchers but also between patients and patient representatives, making sure we understand how to communicate their wishes, their requirements.

Erik Van der Eycken, EU Research Project Officer, GAMIAN-Europe

How to actually involve patients in the research process is still not fully defined. In spite of the fact that patient involvement has become a key element in patient-centred healthcare and it is clear that patient involvement such as working with the clinical research community as co-creators of clinical trials can help make research outcomes and end points more meaningful to both patients and caregivers. There is enough evidence by now that this can help make research more focused and acceptable, starting with asking the right research questions, creating appropriate clinical trials right through to regulatory HTA.

Joke Jaarsma, President, EFNA & Treasurer, EBC

After outlining the ongoing challenges, both from the funder perspective and the patients’ perspective, three invited speakers presented work within their organisations and/or projects, giving concrete examples of actively engaging patients: Pierre Meulien, Executive Director of the Innovative Medicines Initiative (IMI); Paola Zaratin, Project Coordinator of MULTI-ACT; and Patrik Vankrunkelsven, Director of the Belgian Centre for Evidence-based Medicine (CEBAM).

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 panelists in their events and consultations. IMI, as a funding body, needs to continuously work to innovate and update their strategic thinking, which saw the launch of the IMI Pool of Patient Experts last year. This works to “put the patients at the same level as any scientific, clinical, ethical or economics expert and being able to use their own patient experience as a key asset in each stage of the research project life cycle” and gathers patients from all across the EU that can be called upon to help provide guidance within IMI activities and projects. There are currently 157 patients/carers from 26 EU countries registered – the pool is also open to family members and carers. 30% currently cover neuropsychiatric and neurodegenerative disorders.

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. The MULTI-ACT White Paper for innovative routes for patient engagement is a high-level policy-oriented document addressing key actions to be taken in the short, medium and long term by policymakers and research & innovation funders to foster patient engagement in health R&I. It calls for policymakers to take action and implement innovative routes for patient engagement in R&I, leading to research outcomes that matter most to patients and society.

One of the main activities of the Belgian Centre for Evidence-based Medicine (CEBAM) is validating guidelines, which has seen a very fast-paced evolution of the importance of patient involvement. “Just 5 years ago we judged patient involvement as ‘not so important’, however, nowadays, it is really required to involve patients in the development of guidelines, otherwise we cannot validate it.” CEBAM is currently working on the development of a website on “Health and Science” for patients, trying to augment health literacy with the understandable and easy-to-digest presentation of thousands of health guidelines alongside fact-checking of [research-related] news.

The event then shifted back to the original panel of Irene Norstedt, Director, People Directorate, DG Research and Innovation, European Commission; Erik Van der Eycken, EU Research Project Officer, GAMIAN-Europe presenting their views on the challenges of engaging patients in research; Joke Jaarsma, President of European Federation of Neurological Associations (EFNA) President & Treasurer of EBC, also joined by Tomislav Sokol, Member of the European Parliament (HR, EPP). MEP Sokol spoke on the need for structured dialogue and engagement of patients at the EU-wide level, citing the challenges of healthcare being a Member State competence but also the small steps towards change gained by EU-wide programmes/initiatives such as the Cancer Plan and EU4Health. The panel went on to react to the concrete solutions presented by IMI, MULTI-ACT and CEBAM and answered questions from the audience.

The fact that obviously primary competence of organising health care systems and regulating patients’ rights is on the national level; but this was in many cases just used as an alibi for lacking common EU vision of what kind of healthcare provision we want. This is definitely changing and I think that on EU level we have some positive developments, obviously the COVID-19 pandemic has put healthcare, patient needs and patient engagement more to the centre of EU decision making.

We need more structured dialogue and engagement with patient organisations, not just at a formal level in conferences, events, etc. but to really engage them in real decision making in working groups, in creating white papers and at the very start of different legislative and policy initiatives.

Tomislav Sokol, Member of the European Parliament (EPP, HR)

Apart from engaging amongst themselves in the event chat and with speakers during the Q&A, audience members were also able to engage directly in the topic by filling out a pre-event survey, which gathered information about attendees. Around a third of the audience filled out the survey, and of the surveyed audience members, 21% were patients. When asked to rate the amount of involvement patients are given in EU research projects, the audience gave a score of 2.6/5; furthermore, when asked to rate the importance patients are given within research projects, the score was also low, 3.0/5. Additionally, and on a point touched by speakers, the audience was also asked whether they felt patients are given enough support and/or guidance to actively choose to become patient experts, and 79% answered no. In fact, much more work is yet to be done for patient engagement.

The audience was also asked to provide input on the same question posed to the speakers: what are the challenges of engaging patients in research?

These were some responses received:

“Researchers are afraid of losing focus if they involve patients.”

“Many patients (& carers!) already have a hard time because they are dealing with a serious disease. And they don’t get financially rewarded for investing their time and energy. In patient organizations, there already is a lot of extra work to do: bureaucracy & supporting others takes almost all our energy and time already. It’s difficult to find committed, long-term volunteers.”

“The Idea that it’s too hard to involve patients.”

“Connecting patients with researchers, providing patients with adequate information on their diagnosis, treatment possibilities, and clinical trials.”

“Time to generate a diverse and representative patient pool: Involving only 1 patient in a research project leads very easily to overfitting, especially as the patient involved is usually not a good representation of the whole population. It is important to meet with several patients, also the invisible majority, to build solutions that make sense for the targeted group. Experience on how to involve patients (how to maximize their value to the project): Researchers sometimes have a tendency to patronize patients, or to project their views on the patients’ views. Researchers could learn how to interact with patients (and every patient can bring something different to the table) to maximize the value each patient can bring to the project.”

“PPI groups are often not fully representative of the total patient population. They tend to be better informed and higher educated. How can we Ensure that the views of the PPI group truly represent the wider patient population?”

“There is often quite a big gap between the results from research and clear, concrete messages of how that research benefits patients. Researchers prefer to stay close to their research findings, that are limited to certain situations or conditions and don’t want to oversell their research. Patients on the other hand want clear and simple answers and solutions. In addition, researchers often want to understand how something works (i.e. the genetics of a disease) while patients want to know how they can get better. It is often difficult to explain why research is such a slow process, and that it can take many many years before fundamental research is translated into clinical care.”

“[Patients] not knowing about opportunities, what to expect, thinking that they need to have technical knowledge or be highly educated, sub-groups in particular not hearing about it or not feeling things apply to them or that they their views would be valued etc.”

“Patients should be introduced to PPI in a pragmatic, practice-oriented way; have access to support, should have ongoing feedback.”

“Do patients need to be involved in all types of research? Does all research need to be relevant for patients? A lot of research is done to gain knowledge on a topic that seems not relevant for patients now but which will benefit patients and society in the long term. We cannot only focus on short term goals in research projects. That’s not how science works. The biggest challenge is to define the research domains where patients can directly contribute and use their subjective experience. It makes no sense to involve patients in research in which they cannot use their experience. Their subjective experience is the most valuable expertise they have but patients do not have to become neuroscientists themselves.”

Lastly, together with our speakers, the question “how can patient involvement in research be improved?” was explored:

“Patients’ education and training so patients and researchers can understand each other, facilitate peer training (patients who have been involved in research training other patients who can be future research participants), make patient involvement in research more visible to the public, HTA bodies….”

“Generating patient pools and developing tools to generate fair involvement for all the parties.”

“Meaningful involvement of Patients in the research from the design of the research proposal, development, results through to the implementation and treated as full partners in research.”

“To have patients involved from the very beginning on a patient council where they are properly compensated as everyone else in the project. This would help to inform on the barriers and would encourage PwP to take part in the research project as it has been developed with an understanding of the lives experience. Also to include patients in what they want looked at not always what the pharmaceuticals want.”

“More financial support, especially for European disease-specific federations.”

“Creating patient councils to advise researchers on patient priorities, providing opportunities to bring patients and researchers together.”

“To the groundwork of meeting with patients, in their home setting, in their clinical setting, and learn to see the world through their lenses. – Accept that each patient is a human, with different interests, capacities, focuses, than the other patients/humans: learn how to maximize the value of each human to the research question.”

“Now, it is often researchers who involve PPI, but it can also be done the other way around, that PPI contact researchers if they see a problem that needs to be addressed.”

“Involving patient representatives already at the proposal writing stage, and have them as partners in consortia, is already a big step forward. The next step is to involve patients in formulating the research questions and to have a real dialogue between researchers and patients, at all stages of the research (i.e. citizen science).”

“By increasing awareness of researchers about PI and reaching out more actively to a more diverse group of patients.”

“Giving the sense of being and active actor, and giving the information to understand the data management principles and best practices.”

“By shared learning in groups consisting of both patients and researchers.”

“Patient involvement is a too broad and too general concept. Patient involvement can only be improved if both the patients and the researchers are aware of the value of involving patients. That’s why an effort should be put in explaining to basic scientists why they should involve patients in their research. Good arguments need to be provided but might be difficult to find for some areas in research. Only by seeing the added value/expertise/experience that patients bring, researchers will be convinced. For now, researchers involve patients because the commission or their institutions ask for it and their chances to be funded will increase. This is not a good motivation to include patients. In addition, researchers should become more aware of the importance and relevance of soft, “subjective”, phenomenological data instead of only focusing and trusting objective data (e.g., brain imaging) which are not reflecting the experience of the patients and are thus not relevant to patients. Researchers should be “obliged” to include such data in their research.”

“Make patients AND researchers aware of the advantages of patient involvement.”

The panel discussion was closed by moderator, Frédéric Destrebecq, Executive Director of the European Brain Council, echoing the importance many speakers placed on “driving a change” for patients and patient engagement in EU research.

Hilkka Kärkkäinen, President of GAMIAN-Europe, closed the event emphasising the importance of the discussion held on the day and the fact that it is clear that most patients and patient representatives still feel like not enough support is given to have their voices fully heard in research. “All stakeholders should know that patient involvement is meaningful and valuable and that patients are ready, willing and able to get involved. It is not acceptable to approach patients and/or patient organisations last minute looking for endorsement or help in disseminating research outcomes—they should be involved from the start!”

Hilkka highlighted the continued need for the establishment of patient expert pools, trust and relationship building amongst stakeholders and training of expert patients and researchers (much like EUPATI). She finished her address calling for EU policymakers to recognise the value of involving patients in research, including financial support for patient organisations to help foster grassroots patient engagement in research.

Thank you to all who attended and for your active engagement. The chat was very active during the event and we would like to highlight and share a few resources shared and discussed:

The post Event Report: “Patient Engagement in EU-Funded Brain Research Projects” appeared first on European Brain Council (EBC).

EBC launches 2019 Annual Report

Stephanie Kramer — Fri, 24 Jul 2020 11:54:06 +0000

The European Brain Council is glad to announce the release of its 2019 Annual Report, filled with content shedding light on projects, events and activities and further achievements of EBC, its members and its stakeholders.

You can read and download the full report here.

The post EBC launches 2019 Annual Report appeared first on European Brain Council (EBC).

EBC at EAN Congress 2019

admin_ebc — Wed, 03 Jul 2019 12:21:03 +0000

EBC was present again this year at the Congress of the European Academy of Neurology, marking their 5th year of annual congresses. This year the congress was held in Oslo, Norway, and EBC was pleased to be able to participate in the Exhibition Hall as well as in the Scientific Theatre and EFNA-EAN Special Session.

The EBC Exhibition Stand was filled with materials this year – new and old – with a new EBC and EBRA brochure now available as well as the Value of Treatment, MULTI-ACT, MS Policy Narrative, Brain Mission and Election Manifesto documents readily available.

The Scientific Theatre provided a more relaxed area of presentation, and EBC was able to coordinate the presentation of both its current major projects, MULTI-ACT and EBRA.

As Project Coordinators, EBC presented EBRA, providing a general introduction of the project and the next steps to come to an audience of clinicians, industry and patients.

MULTI-ACT was presented by consortium member, Dr. Marcin Kautsch.

Lastly, EBC was also invited to speak at the EFNA-EAN Joint Symposium, “Norwegian Brain Strategy: a plan to strengthen brain health in Europe“. Prof. Hachinski gave the opening presentation on the Global Brain Alliance, with is working to increase the recognition of the growing burden of brain disorders worldwide, and EBC Executive Director, Frédéric Destrebecq, gave insight into the development of national brain plans as a growing necessity as tools for pushing the brain to the top of the EU agenda, and how the network of National Brain Councils can play a role in this.

The post EBC at EAN Congress 2019 appeared first on European Brain Council (EBC).

EBC-coordinated EBRA project launches Call for Clusters

admin_ebc — Thu, 14 Mar 2019 14:47:51 +0000

Today marks the launch of the EBC-coordinated EBRA (European Brain Research Area) project’s Call for Clusters, aimed to promote co-operation and exchange between brain research projects and networks, and thus enable or enhance international collaboration and the emergence of development of clusters in all areas of brain research, in line with EBRA’s aim to foster new, and extend existing, transnational research cooperation of European countries, and to support coordination of research efforts.

A cluster is understood as an association of research projects that can be directed towards basic research, clinical research and/or methodological approaches under a common topic, and disease and/or thematic area.

Visit the EBRA website’s Call for Clusters page now for further details (including application process and deadlines) and to reach the application form and portal:

https://www.ebra.eu/Call4Clusters/

The EBRA project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 825348. The information provided on this website reflects only the author’s view and that the Commission is not responsible for any use that may be made of the information it contains.

The post EBC-coordinated EBRA project launches Call for Clusters appeared first on European Brain Council (EBC).

The European Brain Research Area (EBRA) – H2020 project is officially launched

admin_ebc — Fri, 16 Nov 2018 15:41:56 +0000

1 November 2018 marked the launch of the European Brain Council (EBC)-coordinated EU project The European Brain Research Area (EBRA). EBRA was designed to respond to the Horizon 2020 call, SC1-HCO-10-2018, entitled “Coordinating European brain research and developing global initiatives”, which called for the reduction of fragmentation and duplication of research efforts, fostering synergies through enhanced coordination of brain research efforts at EU and at global level, improved access to and optimising the use of research infrastructures and data sources by the neuroscience research communities, thus ensuring better exploitation of the large investments made in brain research, achieving critical mass and economies of scale by initiating and fostering new global research initiatives, as well a enabling and accelerating the translation of breakthroughs in brain research into relevant clinical applications.

The European Brain Research Area project — EBRA — was created as a catalysing platform for brain research stakeholders (researchers, clinicians, patients, governments, funders and public institutions) to streamline and better co-ordinate brain research across Europe while fostering global initiatives.

The highly diversified nature of European public research, defined as an area of “shared” policy responsibility between individual countries and the Commission, represents a considerable obstacle in the European Research Area, particularly acute in the field of brain research, where the complexity of brain imposes a joint and coordinated research effort to advance our understanding of brain and its disorders.

The EU and its Member States have made considerable investments in brain research leading, to a significant increase of initiatives in this area, particularly under Horizon 2020 and many large research initiatives. Although these initiatives have generated considerable amounts of knowledge and innovative approaches, the complexity of the challenge requires more coordinated efforts to avoid fragmentation, identify gaps and highlight priorities, thus fostering translation into new health interventions.

Over the next three years, the EBRA Consortium will work to foster alignment and better co-ordination of research strategies across European and global brain initiatives; facilitate the emergence of research projects in specific areas in active clusters, and provide them with support for effective collaboration, including enabling sharing of data and access to research infrastructures; and increase the visibility of the brain research portfolio as a whole and promote the uptake of EBRA results to key stakeholders.

The Consortium consists of the EBC membership, the Network of European funding for Neuroscience research (NEURON), Joint Programme – Neurodegenerative Disease Research (JPND) and the Human Brain Project (HBP).

This project has received funding from the European Union’s Horizon 2020 Research and Innovation programme under grant agreement No 825348.

The post The European Brain Research Area (EBRA) – H2020 project is officially launched appeared first on European Brain Council (EBC).