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The European Brain Research Area (EBRA) will host a Special Interest Event at the upcoming FENS Forum 2022 on 11 July at 12:00-12:45 in Hall B.

Brain research is a rapidly evolving field and increasingly at the forefront of science. The EU and its Member States have made considerable investment in brain research leading to a significant increase of initiatives in this area. Although these initiatives have generated considerable amounts of knowledge and innovative approaches, the translation into new health interventions is hindered by the complexity of the challenge and by excessive fragmentation of efforts. Effective and efficient collaboration among the various initiatives is often identified as a key success factor to achieve the full impact of brain research. The European Brain Research Area project therefore aims to bring together the various stakeholders and major brain research initiatives, at European level and beyond, creating the conditions for real and effective cross fertilisation, dialogue, building consensus and exploiting research potential.

During this special session, the EBRA consortium — consisting of the European Brain Council, the ERANET-NEURON, the EU Joint Programme for Neurodegenerative Disease Research and the Human Brain Project — will highlight the importance of shaping the future of European and globally coordinated neuroscience.  In this perspective, the Shared European Brain Research Agenda (SEBRA) will be presented, and discussion will focus on the building of a new partnership on brain health.

Agenda

12:00-12:05:        Introduction to the European Brain Research Area

                               Frédéric Destrebecq, European Brain Council

12:05-12:15:        The Shared European Brain Research Agenda

                               Kristien Aarts, European Brain Council

12-15 – 12:45:    Panel discussion with the EBRA partners

                                Philippe Amouyel, JPND

                                Marlies Dorlöchter, ERANET-NEURON

                                Pawel Swieboda, HBP

                                Juan Lerma, European Brain Council

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The FENS Forum is Europe’s largest international neuroscience conference, covering all domains in modern brain research from basic to translational research.

The Forum represents a unique opportunity for neuroscientists from around the world to gather together and enjoy excellent science in one of Europe’s most vibrant cities.

Organised by FENS in partnership with the French Neuroscience Society, the FENS Forum 2022 will take place on 9-13 July 2022 in Paris, France.

The FENS Forum 2022 will bring together experts in all fields of neuroscience to take us to the forefront of our current understanding of modern brain science. Visit the Forum 2022 website to meet the plenary and special lecturers!

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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 aimed to bring together leading healthcare stakeholders and policymakers to address key questions in the domain of research, such as how the upcoming 9th Framework Programme can accelerate brain research across Europe, what measures can be taken in order to stimulate the development of new central nervous system drugs for treating brain disorders, and what can be done to address the concerns of patients.

FP9 & Missions

In view of the upcoming FP9 proposal, a wide range of independent experts provided recommendations on mission oriented research and how to gain the most out of EU-funded innovation programmes.  Recommendations to double the budget of the next Framework Programme have resounded across institutions: The “Lab – Fab – App” report, written under the leadership of Pascal Lamy, the European Parliament, Commission President Jean-Claude Juncker and European Commissioner for Budget Günther Oettinger. Additionally, Prof. Mariana Mazzucato provided guidance on how research and innovation can address global challenges in the recently released report “Mission-Oriented Research & Innovation in the European Union”. In light of these recommendations, the session “Missions and FP9” aims to facilitate dialogue amongst experts on the mission oriented approach of the European Commission and how the next Framework Programme can boost therapeutic innovation.

Keynote speaker Prof. Andrea Renda kicked-off the first session, giving an insightful presentation on Mission-Oriented Research and Innovation Policy in the EU. He explored EU research as it stands now, and where it could be winning and/or losing. Furthermore, he shared all the different programmes available and supportive of the brain, and called for continued collaboration.

EBC President Prof. Monica Di Luca called for the Brain to be recognised as a Mission, launching the EBC Brain Mission, which calls to ‘understand, fix and enhance’, referring to understanding the brain as the space race of the 21st century. The full Mission can be read HERE.

Newly appointed Director-General of the Directorate-General for Research and Innovation, European Commission, Jean-Eric Paquet, addressed the audience, giving insight into what’s ahead as the work to shape the next Framework Programme begins, speculating on how a mission-oriented approach could pan out.

The Value of Innovation

Developing effective treatments to improve the lives of those affected by brain disorders is extremely challenging. Despite decades of publicly and privately funded brain research, there is currently no treatment available to cure a wide range of mental and neurological conditions. What is more, research efforts do not always translate into tangible results for patients. In view of this, and in the light of the high burden that brain disorders impose on European society, the session on “The Value of Innovation” aimed to empower healthcare experts and stakeholders to present their views on issues that hinder therapeutic innovation and discuss potential solutions.

The session was introduced by EBC Treasurer Joke Jaarsma, and the morning began separated into the perspective of various stakeholders: patients, research, regulators and industry. These perspectives were shared by Hilkka Kärkkäinen (President, GAMIAN-Europe), Jacobo Santamarta Barral (Young Person’s Network at the European Multiple Sclerosis Platform), Prof. Sebastian Brandner (UCL Institute of Neurology), Dr. Marisa Papaluca (Senior Scientific Advisor, European Medicines Agency) and Dr. Christoph von der Goltz (Lundbeck).

A panel session followed, bringing in further stakeholder perspectives, with a discussion from payers, industry, researchers and policymakers. The panel was made up of Menno Aarnout (Executive Director, Association Internationale de la Mutualité), Matthias Wismar (Senior Health Policy Analyst, European Observatory on Health Systems and Policies), Nathalie Moll (Director-General, EFPIA), Prof. Colm O’Morain (Past President, Alliance for Biomedical Research in Europe) and Jaroslaw Waligora (Policy Officer, Directorate-General for Health and Food Safety, European Commission). The panel discussion was moderated by Dr Alexander Schubert (Executive Director, ECNP) and Margaret Walker (Executive Director, EUFAMI).

European Brain Research: Shifting Gears and Going Global

The third session drew focus to global initiatives and the potentials to increase collaboration at the international level, and aimed to provide an overview of the current global brain research initiatives and to allow experts to present their perspectives on how to further enhance cooperation at global level.

Many initiatives aimed at supporting brain research and improving the allocation of research funds were launched at global level in recent years. These efforts have the potential to significantly strengthen collaboration across disciplines and can therefore make a lasting difference for patients and scientists.

The session began with a welcome from Prof. Patrice Boyer, EBC Vice-President, and went on to an introduction on the global initiatives launched with the support of the European Commission by Dr Karim Berkouk, Acting Head of Unit, Non-communicable diseases and the challenge of healthy ageing, Directorate-General for Research and Innovation, European Commission.

This continued to examples of existing and potential collaboration, bringing together Dr. Ari Ercole representing the International Initiative for Traumatic Brain Injury Research (InTBIR) – concrete example of existing international collaboration and the work being done at the global level; Prof. Philippe Ryvlin, Co-Chair, Joint Task Force for Epilepsy Advocacy Europe, International League Against Epilepsy (ILAE) – exploring why epilepsy should be the next global initiative and the value of international collaboration and expanding to a more global level; and Dr. Helena Ledmyr, Head of Development & Communications, International Neuroinformatics Coordinating Facility (INCF)– introducing INCF as an organization and platform for neuroinformatics and the value of international cooperation.

Heads of global networks then gave insight into the scope and function of their organizations and how they are collaborating and cooperating both across Europe and worldwide. This included Prof. Philippe Amouyel, Chair, EU Joint Programme – Neurodegenerative Disease Research (JPND), Chris Ebell, Executive Director, Human Brain Project and Dr. Hella Lichtenberg, Senior Scientific Officer, ERA-NET Neuron.

The session was summed up and concluded by Prof. Wolfgang Oertel, EBC Vice-President, highlighting the vital need for collaboration on the brain.

We would like to thank everyone that was in attendance of the two-day event and for helping provide fruitful discussion.

Addressing the major burden on those living with brain conditions and the costs for European society requires an intensified research effort and the creation of novel solutions. The target of our proposed Brain Mission will be to decrease this enormous burden through better understanding of the physiology of the brain and disease states, relevant prevention strategies, as well as more generally, an increased awareness of the brain and its diseases.

Continued commitment to basic neuroscience research has advanced our understanding of the nervous system, with Europe successfully leading this effort designed to increase our understanding of the brain, as well as the practical and clinical application of this knowledge.

Engagement of the scientific and clinical community at all levels is required in order for the European population to benefit from discoveries and for advances in basic neuroscience to be translated into new diagnostic tools and treatments for brain disorders.

It is imperative now for the brain community to step up and call for the continued recognition of the brain and for the recognition of its importance in the upcoming Framework Programme (FP9). Help spread the Brain Mission far and wide and let’s continue to commit ourselves to advocating for the brain and for the 179 million people across Europe living with brain disorders.

See: BRAIN MISSION

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The first speaker was Prof. Albert Gjedde of the University of Copenhagen. His talk covered “The predictive brain and the future: to boldly go where no one has gone before” which explored how the most fundamental questions about the brain still remain unanswered despite the great advances in neuroscience over the recent years. More than ever before, neuroscientists must engage in efforts to test and apply this novel insight into the key functions of the human brain, as part of neuroscience’s continuing mission to explore the challenges that humans face when their brains age.

The second speaker was Prof. Steven Laureys, Director of the Coma Science Group at the GIGA Research and Neurology Department of the University and University Hospital of Liège, Belgium. He spoke freely to the room on his work in consciousness and coma science, and how understanding consciousness remains one of the greatest mysteries for science to solve. He also made the case for continued but starker support from the EU institutions for science and research, asking for continuity in funding and the work being done- breaking free from project-based restraints, allowing for consistency and longer-term research.

The final speaker was Prof. Gaia Novarino, neuroscientist who investigates the genetic and molecular basis of neurodevelopmental disorders at IST Austria, and spoke on how scientists work to find treatments for pediatric neurological disorders. Neurodevelopmental disorders affect millions of individuals from very young ages, and are often refractory to treatments, and despite decades of intensive research disorders such as autism and epilepsy remain poorly treatable. However, in the last years, researchers have found that autism spectrum disorders, epilepsy and mental retardation are often caused by tiny mistakes in the patient’s DNA; genetic information, therefore, may retain the key to reveal potential
treatment options.

A discussion with the audience follow the speakers, and was a great display of interest and curiosity from the full room. Attending neuroscientists and MEPs alike posed questions to our three speakers, the panel and discussants Prof. Roland Pochet and EBC Vice-President Prof. Patrice Boyer.

EBC would like to thank all its partners and collaborators for making this Brain Awareness Week 2018 outreach event an excellent success, as well as all the attendees who took the time out of their day to travel to the Parliament to make the event. We also extend a special thank you to all MEPs that attended the event and took part in the lively discussion.

The full programme with speakers biographies and abstracts can be found here
The event was livestreamed here

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