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Innovation Hall

Are you looking to: Boost your visibility? Broaden your network and meet like-minded people from industry, start-ups, investment, research, health care and patient organisations? Learn from key experts in the brain innovation field?

If yes, we warmly invite you to join us in the Brain Innovation Days Innovation Hall! The Brain Innovation Hall is the place to be in order to showcase and discuss your project and/or innovation with the high-level array of stakeholders attending the Brain Innovation Days.

Abstract submissions will be open until 5 May 2023.

Pitch Competition

We want to provide the opportunity to showcase great examples of brain innovation in Europe that can create positive impact — innovations and solutions that will improve the quality of life of people with brain disorders (neurological and mental alike) and support clinicians, researchers, patients & caregivers, industry, and society as a whole.

Do you have a start-up or business plan set up for the next great brain innovation and are up for some competition? Then the Brain Innovation Days Pitch Competition is the opportunity for you! Pitch your business in no more than 180 seconds to join the running for a Jury and/or Public Prize.

The application process will be open until 5 May 2023.

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The European Brain Foundation (EBF) invites you to Save the Date for its first Fundraising Gala Dinner, which will take place in Brussels during the Brain Awareness Week on 16 March 2023. 

The Gala Dinner will fall under the theme “Healthy Brains – a key to future generations in Europe”. A nod to the EBF’s core mission and goal to serve society and support those affected by brain disorders, the theme showcases the great purpose we have to make sure that children, teenagers, and adolescents –  our future generations – are provided with the best tools and care to protect their brain health. Guests and donors will contribute to help the EBF’s quest to reduce the impact of one of the biggest health challenges society is currently facing.

The newly-formed European Brain Foundation — an independent multidisciplinary and multistakeholder charity whose founding members represent leading European neurological, neurosurgical, and psychiatric clinical societies as well as neuroscience research and patient organisations — was officially launched on the occasion of the 2nd in-person Brain Innovation Days on 11-12 October 2022. 

Its goal is to support research aiming at reducing the burden of brain disorders for European citizens. By coordinating all the partners concerned in this domain, the EBF will ensure the transparency and the sustainability of its actions. Donors will contribute to significantly reduce the impact of one of the biggest health challenges European society is currently facing. 

Follow the EBF social media channels (Twitter, LinkedIn, Facebook, Instagram) for all the latest updates – more information on the Fundraising Gala Dinner coming soon! 

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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:

• IMI Patient Engagement Info
• IMI Project Factsheets
• Online e-learning platform aimed at increasing awareness of mental health hurdles that ensued after the COVID pandemic, along with some concrete strategies for patient engagement
• MULTI-ACT Project Outcomes
• EBC Policy Roadmap “Brain Health in Europe: Fostering Innovation, Improving Outcomes”

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The event was kindly hosted by MEPs Heinz K. Becker (EPP, AT) and Marian Harkin (ALDE, IE), both members of the European Alzheimer’s Alliance, moderated by Geoff Meade and chaired by EBC President, Prof. Monica Di Luca, and hosted an excellent line-up of expert speakers and roundtable participants, who each presented and led fruitful conversation around the future of Alzheimers research, patients and carers as well as the impact the disease has and will have on society.

Dr. Ron Handels and Prof. Philip Scheltens, members of the VoT Alzheimer’s Working Group, presented their work on the potential health-economic impact of treating Alzheimer’s and the patient journey for people living with Alzheimer’s. Mr Nis Peter Nissen then continued with a national insight, speaking on the cost of informal care of Alzheimer’s in Denmark.

The roundtable brought together key stakeholders in the Alzheimer’s and neurology communities, including leading academic and policy experts on the socioeconomic burden of Alzheimer’s from organisations such as the OECD and the European Commission.

The full agenda can be looked back on HERE.

The event also marked the conclusion of the “What if” series of policy roundtables, which launched in the European Parliament in September of last year with an event on the The Right to Dignity: Overcoming the stigma and inequalities faced by people with Alzheimer’s and a second meeting in January 2018 on Overcoming the ethical challenges of early detection and diagnosis.

The discussion and policy recommendations of last week’s and previous roundtables will now be captured in a White Paper on driving the policy agenda to optimise care for people with Alzheimer’s disease in Europe today and tomorrow. The White Paper, collaboratively developed and endorsed by MSD, EBC, EFNA and other stakeholders, will be launched at the meeting of EFNA’s Brain, Mind and Pain MEP Interest Group on 21 November 2018. As we enter campaigning season for the European Parliament 2019 elections, the White Paper will be a valuable tool to support advocacy activity focused on delivering better policy today and tomorrow for people with Alzheimer’s on EU and national level.

More can be read about the Value of Treatment, the Alzheimer’s findings (Posters / Report), and follow the launch of the white paper and all the latest EBC news and events here online and on Twitter.

©EPPGroup/Lahousse

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The well-attended and fruitful event was held under the title “The Value of Early Intervention in Brain, Mind and Pain Conditions”,  and included two panel discussions:

The first panel addressed the conclusions and recommendations of EBC’s Value of Treatment research project and White Paper, and explored the value of early intervention, using the case-studies of four disorders – presented from various stakeholder perspectives –and how the EU can support the solutions identified. The panel, led by Paul Arteel (GAMIAN-Europe), included presentations from the Stroke (An epidemiologist and neurologist’s perspective – Dr. Alistair Webb, UK), Multiple Sclerosis (A public health and policy’s perspective – Ms. Vinciane Quoidbach, Belgium), RLS (A patient’s perspective – Ms. Joke Jaarsma, Netherlands) and Schizophrenia (Families’ perspectives – Ms. Aagje Ieven, EUFAMI, Belgium) working groups.

The second panel, chaired by Ann Little, President of the European Federation of Neurological Associations (EFNA), focused on the possible next steps in the Value of Treatment project – exploring the application of the developed methodology to other disease areas e.g. rare diseases or chronic pain, as well as a future focus on interventions such as rehabilitation.

MEP Michał Boni began the discussion by discussing a move and need towards Integrated Care, and Ms Vinciane Quoidbach, Public Health Policy, Research Project Manager Value of Treatment Research Project at EBC presented the Value Proposition of a second VoT project.

The panel then continued into a discussion on potential case studies, addressing unmet needs, with presentations on rare diseases (such as Ataxia): A neurologist’s perspective – Prof. Paola Giunti, UK, Myalgic Encephalomyelitis: A patient perspective – Nancy van Hoylandt, Belgium and Chronic Pain: A researcher’s perspective – Dr. Nick Guldemond, University of Rotterdam.

Before the panels concluded with a Q&A from the audience, Guest speaker Stephane Hogan, Head of Neuroscience, DG Research & Innovation gave his report on the work of the Commission and the continued support and dedication to brain research.

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On 22 June, the EBC research project on the Value of Treatment of Brain Disorders (VoT) in Europe came to a close with the launch of a policy white paper including the data collected by 9 expert working groups.

Covering a range of mental and neurological disorders, the VoT study examined health gains and socio-economic impacts of best health interventions (pharmacological and psychosocial alike), and addressed the current early diagnosis and the treatment gap of the various brain disorders. The conference itself focused on addressing the burden of diseases and issues in the current health care system, the health services delivery and care pathways design and proposing evidence-based and cost-effective solutions to achieve high value for patients.

With the completion of the first VoT project, EBC provided the necessary policy recommendations to address the treatment gap and its consequences for patients and citizens at large.

EBC President Prof. David Nutt welcomed the full room by introducing the details of the project, and that the working groups worked on how to “close the treatment gaps for brain disorders”. “EBC is not only looking at the socio-economic impact and value of healthcare interventions, but is also emphasizing how timely care pathways need greater integration and how better collaboration can be achieved in the future for the benefit of those living with, or at risk of, a brain disorder,” Prof. Nutt pointed out.

Prof. Nutt went on to co-present the project with Prof. Günther Deuschl, President of the European Academy of Neurology, to discuss its intentions, development and findings. VoT wanted to explore bridging the early diagnosis and treatment gap, as despite the escalating costs of brain disorders, numerous needs of individuals at risk and patients are unmet, and around 8 out of 10 people living with a brain disorder remain non-treated or inadequately treated although effective treatments exist. Health services, generally, remain quite fragmented, and working groups collectively found that more patient-centred and seamless, interdisciplinary care is still needed. Furthermore, though there has been significant progress in brain research over the last 50 years, and basic and translational research are at a threshold for new findings with a major impact on treatment, continued investment into brain research remains as important and necessary as ever.

Prof. Patrice Boyer, EBC Vice-President, elaborated on both EBC and VoT’s Call to Action for more research on brain disorders and the need for a healthcare system transformation to implement a seamless, coordinated system of “care networks” at national, regional and local level. He continued to summarize the key policy recommendations that the VoT white paper concludes with: implementing best practice to improve the patient’s flow at healthcare level; basic, clinical and translational research is imperatively needed, now more than ever at research level; and converging action towards EU wide brain plan and promoting the set-up of knowledge hubs on a health policy and health system governance level.

Keynote speaker Mr. Martin Seychell, Deputy Director-General, Directorate General for Health and Food Safety, European Commission, remarked that sustainability of healthcare is an increasing issue, stating that there is “no social Europe without health”. Alongside second Keynote Speaker Dr. Line Matthiessen, Acting Director, Health Directorate, Directorate General for Research & Innovation, European Commission, the two pledged the EU Commission’s continued support for brain research.

The European Commission has significantly increased funding for research on brain diseases, with 5.3 billion euro ear-marked between 2007 and 2017. However, this sum, shared between the 165 million Europeans with brain disorders, works out at just over 3 euro per person per year.

On the side of economic analysis, EBC partnered with the London School of Economics (LSE) to produce economic evidence on the value of treatment of brain disorders to inform decision-making. Prof. Martin Knapp of LSE presented the “very strong” economic case for investing in treatment for brain disorders after carrying out an overarching analysis of the economic evaluation and case studies. Closing treatment gaps is widely beneficial – for patients, families, providers, payers, policy-makers – and the economic arguments need to be seen alongside other essential elements in shared decision-making, especially by these various stakeholders.

The project and all communication from the conference highlighted the main issue: there is no cure for most brain disorders. More and better research is needed to develop treatments and to provide for earlier intervention.

Presentations were given by all leaders of the nine working groups, which covered the patient journeys and economic analysis of Alzheimer’s disease, Multiple Sclerosis, Normal Pressure Hydrocephalus (NPH), Stroke, Headache, Schizophrenia, Parkinson’s disease, Restless Legs Syndrome and Epilepsy. This was done through a panel discussion of all working group leaders, as well as through a 2-hour poster presentation session during lunch, where working groups had the opportunity to present their work to smaller groups of attendees.

The working group’s analyses continued to be presented throughout the day, with the panel discussions moderated by journalist, Peter O’Donnell.
*Further details on individual case studies can be found below, and furthermore, in the white paper.

The second panel discussion brought together various experts to discuss the VoT research conclusions and policy recommendations. Representatives from organisations like the European Commission, European Parliament, Organisation for Economic Co-operation and Development (OECD) and European Observatory on Health Systems and Policies discussed the policy recommendations provided in the White Paper, and views by patient and carer advocates such as The European Federation of Families of People with Mental Illness (EUFAMI) and AGE Platform Europe gave depth to the conclusions found by the two-year study.

Mr. Omar Cutajar, Research Attaché of the Maltese Permanent Representation to the EU in Brussels, closed the conference with a short recap of the collaboration between EBC and the Maltese EU Presidency and the work that has been accomplished. He affirmed further support and called for further collaboration and continued work for brain research in the European Union.

The full day conference came to a close with final words from Prof. David Nutt, who thanked on behalf of EBC, all members and partners for being part of this challenging “journey”, and looks forward to future work together, the continuance of the Value of Treatment project, and for continued work in improving the lives of those living with brain disorders across Europe, and the world.

© Photos by Bart Decobecq

_________________________________________________________________________________________________________________________

*Epilepsy treatment gaps vary from 10-20 % in developed countries to 75% in low-income countries—well-coordinated and accessible services from first seizure to complex epilepsy surgery can result in reduction of mortality, improve quality of life and is cost saving.

Societal costs of Alzheimer’s disease in Europe are reaching an estimated 190 billion euro, and though brain pathology can now be detected 20 years before the onset of dementia, diagnosis is often made at a later stage of the disease and treatment is symptomatic only.

The large treatment gap of Schizophrenia can be closed by timely, effective and consequent prevention, treatment and management—and early intervention has also shown to improve outcome in a cost-effective way. Investing in research on optimizing interventions, in information systems, awareness building and destigmatization, in training of the mental health workforce, and in better access and delivery of health services are further prerequisites guaranteeing optimal health in severe mental disorders like schizophrenia.

Headache is the 3rd disability leading cause worldwide, and creates societal costs of over 100 billion euro per year. Specialist care is lacking, and the chronic disorder often remains undiagnosed, mistreated or underrecognized as a disorder.

Multiple sclerosis is the leading cause of non-traumatic disability worldwide, and places a societal cost burden of over 15 billion euro per year in the EU. Early treatment and a brain healthier lifestyle slow MS progression and indeed reduce the disease societal and health care costs—for example, lifestyle factors, such as cigarette smoking habit and low vitamin D serum levels, may accelerate disease worsening by 2-fold.

Parkinson’s Disease is the second most common neurodegenerative disorder, with approximately 1.3 million patients across Europe, and costs of €13.4 million per year. Diagnosis is still clinical, and delay of diagnosis averages at about 2.3 years. Furthermore, no preventive or disease-modifying treatments exist, meaning individualized care and access to new treatments can play a major role in the lives of patients. The working group concluded that the amount of disease-specific research funding should be allocated depending on the impact of the disease on the population and the economy of the respective society.

Normal Pressure Hydrocephalus (NPH) is a very common disease in the elderly, manifesting in around 5% of the population over 65. Unlike some of the other disorders covered by VoT, very effective treatment is readily available, but still NPH very often remains undiagnosed and very often untreated. NPH treatment is life-saving, improves the quality of life and is cost effective.

Moderate to severe Restless Legs Syndrome (RLS) affects 2.5% of the European population, and ranks 5th for socioeconomic disease burden of brain disorders in Europe as the costliest neurological disease according to the working groups’ findings. However, there is a still a lack of knowledge in diagnosing and treating RLS, meaning patients often go misdiagnosed and untreated. Policies aiming to increase disease recognition and search for new treatment strategies need to be intensified to reduce substantial societal cost.

Stroke is the leading cause of morbidity/mortality in Europe, but major treatment gaps still exist. 18% of strokes are associated with Atrial Fibrillation, the most common heart rhythm disturbance, yet AF generally remains undertreated. Furthermore, there is a low implementation of specialised stroke units across Europe, which leaves patients misdiagnosed or improperly treated upon onset of stroke. Past this, there is also low access to rehabilitation.

Read all working group findings in the policy white paper and individual working group poster presentations

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