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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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In a meeting of the MEP Alliance for Mental Health, held on 10 November, representatives of mental health-related organisations and MEPs underlined the need and voiced their support for a dedicated European Year for Mental Health, to be instigated in the short term.

Background to this event, organised by GAMIAN-Europe, is the general and pressing need to ensure awareness – with policymakers, service providers, the general public – of the importance of mental health in all its aspects, ranging from prevention, to diagnosis, treatment, care and cure.

Maria Walsh MEP, co-chair of the MEP Alliance for Mental Health already referred to need for (and potential of) such a Year in October 2019; speaking in today’s meeting, the stated that ‘now is the right time to launch a strong campaign in order to turn this idea into reality: due to the current COVID-19 pandemic, never before has there been such a concern about mental health and well-being of the population’.

The meeting brought together a small group of relevant organisations to have a first discussion on the potential aims, content and strands of action of a European Year for Mental Health. Discussions also took place on the actions which should be taken to best advocate to ensure that such a Year will become a reality as well as the potential roles of the various participating organisations can play in this campaign.

MEPs Alviina Alametsa, Estrella Dura Ferrandis, Radka Maxova, Alex Agius Saliba, Tomas Zdechovsky, Stelios Kympouropoulos, Brando Bennifei and Katalin Cseh all welcomed the initiative to campaign for a Year and explicitly their support and commitment to ensuring that it becomes a reality.

The results of today’s discussion will now serve to prepare a preliminary outline of aims, potential themes, activities and structure of a European Year for Mental Health as well as of an advocacy plan, both of which will then be discussed in a larger meeting of the MEP Alliance early next year, also involving stakeholders outside the field of mental health.

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You can read and download the full report here.

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

Today, over 35 million people are estimated to be living with depression in Europe Its cost is 30% higher than that of stroke. Yet as a society, we lack understanding of depression and empathy for those affected. Policies focused on depression exist, but implementation is variable and suffers from significant under-resourcing. This in turn contributes to significant gaps in diagnosis and care: only 25% of people diagnosed with depression receive appropriate and timely care.

These gaps need to be remedied – and require a comprehensive, sustainable policy response, looking at how to prevent and manage depression across all aspects of society.

The organisations listed above joined forces to address this need; they agreed to produce a report aimed at providing policymakers with concrete ways to better address the full spectrum of depression and its impact on our societies.  The report drew from the practical experiences of a variety of innovative projects addressing different aspect of depression across the EU. Key factors and lessons learnt were identified which can help policymakers develop and put in place concrete, relevant and sustainable policies and initiatives.

Today’s event aims to:

• Present the key findings of this report;
• Showcase examples of successful projects addressing depression;
• Exchange views on how depression can be prioritized on the EU and national policy agendas;
• Forge links between relevant stakeholders and explore ideas for future cooperation to ensure better management of depression.

A summary of the report is available below and the full report can be read and downloaded HERE.

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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.

The post The Value of Early Intervention in Brain, Mind and Pain Conditions event – 12 July 2017 appeared first on European Brain Council (EBC).

Joop van Griensven (Pain Alliance Europe) welcomed participants and thanked all those involved with obtaining signatures for the Written Declaration on Access to Employment for those affected by neurological disorders and chronic pain conditions. Some 180 signatures were gathered, and while this is not enough for adoption of the Declaration by the European Parliament, this result is positive nevertheless. The work will continue as the Written Declaration will now become a Call to Action (#makeworkwork).

Raquel Cortés Herrera (European Commission, DG EMPL) who presented the rationale and content of the Social Pillar. As the Pillar is in the process of being adopted, it is not possible to prejudge the final content and format, but Raquel Cortés did underline the current Commission’s commitment towards social policy, with the Social Pillar being the most prominent example of this commitment. It will determine the current Commission’s mandate and activity in the social arena.

The structure of the Pillar is based on a thematic approach, set out in three main chapters:

1. Equal opportunities and access to the labour market: This includes skills development, life-long learning and active support for employment.
2. Fair working conditions: Needed to establish an adequate and reliable balance of rights and obligations between workers and employers.
3. Adequate and sustainable social protection: This includes access to health, social protection benefits and high quality services, including childcare, healthcare and long-term care, which are essential to ensure a dignified living and protection against life’s risks.

Donna Walsh (European Federation of Neurological Associations) then spoke. She briefly introduced the focus areas of the MEP Interest Group on the Brain, Mind and Pain, i.e. stigma, quality of life (employment, education), patient involvement and research. EFNA has submitted a joint response with Pain Alliance Europe to the Social Pillar consultation. EU social legislation is central to employment and educational opportunities for those affected by brain, mind and pain disorders. She underlined that health at work is not just a socio-economic issue. In order to avail of the opportunities to access employment that the European Social Pillar could provide, people living with brain, mind and pain disorders need early and accurate diagnosis as well as appropriate treatment and management. Big health inequalities persist across the EU; for instance, two thirds of people with brain disorders receive no treatment and 40% of people with chronic pain report that it is not adequately controlled. Therefore, the EU and its Member States must acknowledge that accurate, early diagnosis and appropriate treatment/management are necessary to enable those with chronic conditions to optimize the social acquis covered by the European Social Pillar.

The next panelist, Andreea Antonovici (European Multiple Sclerosis Platform), briefly introduced her organisation and its work in relation to employment, such as a Call to Action on Access to Employment for People with MS was launched in 2015, supported by over 70 MEPs and the ‘Believe and Achieve’: a paid internship programme aimed to create opportunities for young people with multiple sclerosis to develop their professional skills through partnerships with businesses across Europe. In relation to the Social Pillar, EMSP has submitted a response which focuses on the need to tackle inequalities and make the necessary changes to make sure EU legislation is being applied at national level in order to put an end to discrimination. EMSP pledges for the empowerment of people with disabilities as they need to have access to the right tools and information in order to stand up for their rights. As already underlined by Donna Walsh, because there is no common definition of disability, accepted and implemented in all Member States, determining eligibility for income maintenance is still difficult. This leads to employers finding gaps in the law and patients being discriminated.

The final panelist was Katie Gallagher (European Patients’ Forum), who briefly introduced her organisation and its mission. EPF’s vision is that all patients in the EU should have equitable access to high-quality, patient-centered health and social care. One of the most pressing and social priorities is the need to develop a supportive working environment for patients. Patients can face stigma or discrimination at work at various stages which prevents them from entering/remaining in the labour market. Ensuring that workplaces offer support for patients is crucial to achieve Europe2020’s goal of “smart, sustainable and inclusive growth”

The final speaker, Sam Kynman (European Pain Federation EFIC) gave a brief presentation of his organisation’s campaigning and advocacy work to raise awareness of the personal and societal impact of pain. EFIC will organise a large symposium during the Maltese EU Presidency (where the Maltese President will speak), as a direct result of advocacy efforts. The Italian Presidency (2014) also paid attention to pain and its impact and EFIC will concentrate on the Estonian Presidency next. These are small but necessary steps which will create the required momentum at some point – someday pain may be used as an indicator for health policies across the EU.

In conclusion, Nessa Childers MEP (left) called on participants to keep on raising their voices and stimulating awareness as many of the health conditions that have an impact are still not visible enough. We need to work together as the more these topics are spoken about the more impact they will have.

Marian Harkin MEP closed the meeting with two messages: the first related to the importance of connections, i.e. MEPs feeding all comments on the Social Pillar presented today into the system that would eventually produce a Social Pillar, connecting to the right people to put the messages across (like in the Maltese example) and connecting the important work of OSHA to the work done by the NGOs, which is a two-way process. The second related to the fact that it is the responsibility of us all to ensure a social Europe in the future, where the voice of citizens counts.

 To read the full report written by Brain, Mind, Pain click here.

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Our joint statement on mental health urges the EU and Member States to step up efforts to fully implement the Joint Action’s resulting Framework for Action as a priority. The Framework for Action is the first comprehensive European policy on mental health which gathers guidelines and recommendations for Member States. There is much more space for the EU to address mental health in an integrated way and our joint statement develops recommendations on how to ensure:

1. Parity of esteem, which is the principle by which mental health must be given equal priority to physical health
2. A Life course approach to mental health which supports better understanding of mental health for all age groups and transitional times (mental health and pregnancy, mental health and ageing…)
3. More attention is given to mental health in the workplace which is too often overlooked in occupational health and safety policies
4. The improvement of mental health treatment in primary care settings and encouraging more holistic and person-centered approaches to mental health.

The Joint Statement is available on the Health Policy Platform.

Signatories: 

Mental Health Europe
European Federation of Associations of Families of Persons with Mental Illness (EUFAMI)
Council of Occupational Therapists for the European Countries (COTEC)
Eurocarers
EuroHealtNet
European Brain Council (EBC)
European Federation of Psychologists’ Associations (EFPA)
European forum for primary care (EFPC)
European Patients’ Forum (EPF)
European Psychiatric Association (EPA)
European Public Health Alliance (EPHA)
European Region of the International Lesbian, Gay, Bisexual, Trans and Intersex Association (ILGA Europe)
Global Alliance of Mental Illness Advocacy Networks-Europe (Gamian Europe)
International Rehabilitation Council for Torture Victims (IRCT)
Platform for International Cooperation on Undocumented Migrants (PICUM)
The International Federation for Spina Bifida and Hydrocephalus (IFSBH)
The Standing Committee of European Doctors (CPME)

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