New Brain, Mind and Pain Book of Evidence released for the 2019-2024 EU mandate

New Brain, Mind and Pain Book of Evidence released for the 2019-2024 EU mandate

The Brain, Mind and Pain (BMP) initiative has today launched its updated Book of Evidence for the 2019-2024 EU mandate.

This Book of Evidence (BoE) sets a strategic vision on policy action to deliver better care for people with neurological and chronic pain disorders in the EU.

It will be used as the core policy document of the MEP Interest Group on Brain, Mind & Pain – which will continue after the upcoming EU elections for the next 5 year mandate.

The Interest Group is coordinated by European Federation of Neurological Associations (EFNA) and Pain Alliance Europe (PAE).

On today’s publication of the BoE, Donna Walsh, EFNA Executive Director, says, ‘Following the successes of our MEP Interest Group over the past five years, we felt strongly that we needed to continue our work. However, for the coming years, we want to pursue more concrete policy recommendations within a narrower scope of action – reflecting the current policy opportunities at EU level but, most importantly, more centred on the priorities of the patient groups we represent.’

Therefore, this updated BoE outlines clear focus areas and proposes recommendations for policy actions, which, if implemented, would significantly improve quality of life for people with neurological and chronic pain disorders, as well as their families and carers.

The development of the document was led by EFNA and PAE and involved a wide range of key EU and national stakeholders from the patient, policy, industry and scientific communities.

This collaborative development process is reflected in wide ranging endorsements and support from organisations such as the European Commission, European Brain Council, European Patients’ Forum, European Academy of Neurology, European Pain Federation and European Alliance for Patient Access.


Key areas for action

The BoE outlines the thematic areas of focus for the MEP Interest Group on Brain, Mind and Pain for the 2019-2024 mandate. These are:

» Eradicate stigma, isolation and discrimination: A lack of public awareness of BMP disorders feeds their stigma and the associated isolation and discrimination suffered by BMP patients, carers, and their families

» Ensure equitable access to treatment, services, and support: Access to treatment, services, and support is a topic of concern for patients in Europe due to high failure rates, delays in market access, relatively expensive treatments, and inequality in access across, but also within, EU Member States

» Promote patient empowerment for increased involvement and engagement: Patient empowerment is a means for more effective BMP patient engagement and meaningful involvement in the research, medical and policy conversations which affect them

These areas have been chosen in order to support the MEP Interest Group in leveraging current policy opportunities on the agenda whilst ensuring continuity with the past activities and successes of the BMP initiative.


Driving policy change

The 2019-2024 mandate brings with it an active policy environment at EU level, with numerous opportunities for advocacy on behalf of people with brain, mind and pain disorders.

Ensuring that the Interest Group is capable of impacting policy discussions throughout the 2019-2024 mandate will be key in making progress in the three key thematic areas identified.

Additionally, with the global priority turning more and more towards NCDs, we need to ensure that brain, mind and pain disorders are part of global health policy agenda.

To this end, each chapter of the BoE contains a section on the policy opportunities and subsequent actions that can be leveraged to further progress in each thematic area and at EU and global level.


Looking ahead

It is now the responsibility of the Interest Group and the wider BMP initiative to leverage the policy opportunities and pursue the policy actions identified in this text throughout the 2019-2024 mandate.

EFNA President, Joke Jaarsma says: ‘Progress is contingent on coordinated policy advocacy at EU and global level, taken forward by the BMP initiative as a whole and its partners.

‘Using the BoE as a springboard for action, let’s drive policy change and make a real difference to the daily lives of people living with BMP disorders across Europe!’ she continued.

For any further information on the BoE or the activities of the BMP initiative – including its MEP Interest Group – please do not hesitate to contact EFNA at:

Fighting Discrimination at Work for those affected by neurological disorders and chronic pain conditions

Fighting Discrimination at Work for those affected by neurological disorders and chronic pain conditions


March 6th 2019, Room JAN 6Q2, European Parliament, Brussels
16.00 – 18.00hrs


Meeting report

Joke Jaarsma, President, European Federation of Neurological Associations briefly introduced EFNA. She then informed everyone that the MEP Interest Group will continue its work after the EU elections and will focus on three themes:

  • Fighting stigma, isolation and discrimination
  • Ensuring equitable access to treatment, services and supports
  • Promoting patient empowerment for increased involvement and engagement

This will build on the work that the neurological and chronic pain community have undertaken over the previous five years.

Jaarsma explained that the focus of the meeting is on fighting discrimination at work. She stressed that the level of stigma associated with brain, mind and pain disorders is very serious and can influence employment opportunities, which is why stigma and isolation seriously affect work. She added that a large percentage of the costs of these disorders can be attributed to the loss of employment and associated social welfare costs – as well as absenteeism and presenteeism of those affected and/or their informal carers. It is important to understand that by keeping people at work longer, we can reduce the economic impact – but also improve the quality of life of those affected.

In this regard, EU policy can help to put structures in place to ensure that our employers and our workplaces are better equipped to recruit, retain or reintegrate people affected by neurological disorders and chronic pain conditions.

She then handed over to the host MEP, Jeroen Lenaers who she congratulated on recently receiving the EFNA Neurology Advocacy Award for Young Policy-Maker.

Lenaers started by recalling a pain box campaign from several years ago, where he could experience first-hand the physical sensation of chronic pain. It made him more interested in this field. He added that from his personal standpoint, stigma was one of the most interesting issues, especially when it comes to the workplace. He noticed the double disadvantage that occurs for people suffering from, not just disease, but also the associated stigma.

He reminded us that EC President Junker said that Europe should not just have a financial AAA rank, but also a social one. He added that this MEP Interest Group was successful, to date, because many politicians have not just come to talk, but to listen to the experts, including – most importantly – the patients, and then pushing for action. Therefore, he stressed his liking that the group would continue during the next mandate and build on this success.

The subsequent speakers focused on the impact of Brain, Mind and Pain Disorders on Employment.


Elena Ruiz de la Torre

Migraine as a first case study was discussed by Elena Ruiz de la Torre, Executive Director of European Migraine and Headache Alliance [EHMA] who started by introducing her organisation. She then explained that migraine is not merely a stronger headache but it is a real bio-neurological disease that affects some 160 million adults across Europe. It is also the second cause of years lived with disability world-wide. 2-7 working days are estimated to be lost from work by those with non-severe migraine annually. However, for those with chronic migraine, the number is much higher: up to 46 work days per year! Therefore, it has a huge impact on the professional and personal lives of those affected. It was noted that migraine is twice as common in women than in men, and is often most impactful during the most productive years of life.

Ruiz de la Torre also discussed the Migraine at Work survey that was conducted in collaboration with the Spanish Occupational Practitioners Society. Over 3300 responses were received from employees with migraine from 8 EU countries. Key recommendations included adapting working arrangements; with measures such as flexible time, rest areas and teleworking. 85% of participants consider that a job facilitates social integration.

The speaker finished by discussing how EMHA could support EFNA’s initiatives as well as informing about EMHA plans to create an interest group on migraine in the EP. One of the issues that the group would tackle is migraine and woman.

More details can be found in the corresponding presentation.

Joop van Griensven

Joop van Griensven, President of Pain Alliance Europe followed by talking about Chronic Pain and the survey that they conducted in 2018. One of its most surprising outcomes demonstrated that public administration had one of the highest proportion of chronic pain patients, i.e. about 50%. Also more than 50% people reported that their condition prevented them from performing their work. Other topics dealt with issues such as drop of income which might be affected by stigma, an issue that deserves much more discussion and solutions.

He concluded by declaring that PAE together with EFNA will continue to ask questions and help seek solutions for this major societal problem.

More details can be found in the corresponding presentation.

Elisabeth Kasilingam

Next speaker, Elisabeth Kasilingam, represented the European Multiple Sclerosis Platform of which she is the Managing Director. EMSP is a pan European NGO engaged in advocacy and awareness raising activities. She observed that the topics discussed at the meeting are very important for people with MS. In the past 10 years, EMSP conducted several editions of its MS barometer highlighting what the gaps and good practices are regarding disease management in Europe. Access to employment and social inclusion is specifically tackled in the barometer.

She said there is a clear need for further education of employers. And, she stressed, it is important to align the health and social policies in the Member States. There is already much legislation but there is not enough alignment and implementation. This gap makes the life of people affected by MS more difficult.

In 2015 the largest study with people affected by MS was conducted by Prof. G. Kobelt – “New insights into the burden and costs of MS in Europe”. It was observed that the work capacity of affected individuals declined from 82% to 8% in the years following diagnosis. Work hours, sick leave and productivity while working was measured in the study. The results confirm the importance of early intervention to change the disease course. It also supports the call for incorporating management of symptoms such as fatigue and cognition into routine clinical practice.

Kasilingam stressed that it is clear that working together is the key. To this end a toolkit was prepared along with other documents and guidelines to support various aspects of MS management. Currently EMSP is working on promoting these various tools.

Coming to conclusions, she reminded the audience that in many countries there is still no official definition of chronic disease and there is no common understanding about the concept of disability. We also need to highlight the reality of poverty, deprivation and social isolation due to being unemployed because of chronic illness.

Finally, patients should be trained and empowered to take a more meaningful role in the decision making process. Financial support for national patient organisations is needed to provide capacity building training for patients, so that people with the chronic illnesses are present at decision-making level.

More details can be found in the corresponding presentation.

Francesca Centola, Project Officer at Eurocarers took over. Eurocarers is the European network of carers’ organisations and research institutes with members in 27 European countries. She explained that an informal carer is any person who provides care – usually unpaid – to someone with a chronic illness, disability or other long lasting health or care need, outside a professional or formal framework. 80% of care is provided by informal carers.

The economic value of informal care in EU is between 50% and 90% of overall formal long term care costs. There is a significant gender gap in terms of the level of involvement with most of the care provided by woman.

She then talked about combining care and paid work. Usually informal carers would prefer to combine care and employment, although this often proves to be challenging. It is also in the interest of companies to allow employees to combine these two as there is a strong business case for it. The cost of inaction is much higher than a cost of intervention.

She then explained how informal carers can be supported. Being a carer should be a matter of choice. For the choice to be genuine, there needs to be the provision of formal long-term care services, of good quality and affordable. In addition to this pre-condition, a set of support measures can be put in place, such as care leave, flexible working arrangements, pension credits for time spent providing unpaid care.

The need to support carers with both access to services and work-life balance measures is gaining momentum at EU level. The European Pillar of Social Rights affirms the right to affordable long-term care services of good quality (Principle 18), as well as the right to suitable leave, flexible working arrangements (Principle 9). The ‘Work-Life Balance’ Directive introduces a care leave of 5 days/year.

She finished by informing participants that Eurocarers has recently launched a European Strategy, which indicates the 10 key actions to implement a carer-friendly policy environment seeking to recognise, support and empower informal carers across Europe in a comprehensive and coherent manner.

More details can be found in the corresponding presentation.



Leaners found the presentations very informative. He said that awareness and empowerment seemed to be resurfacing and clear recommendations were very helpful to receive during presentations. He then wondered if we have some good practices from EU countries, as the EU can be a platform for sharing and disseminating best practice. He also noted that it was valuable to hear the perspective of people directly affected – the patients and the carers.

An issue was raised from an audience regarding applying for jobs with chronic illness. For part time jobs, employers ask why young people want to work part time. Applying for jobs can be scary for young people. Chronically ill people should be seen as people and not patients. Patients should be seen as being valuable additions for organizations. It is not only difficult to be functional at job – getting a job is also challenging and should be addressed.

Another comment was made about many neurological diseases that create deficits that are often not seen. J. van Griensven said that raising awareness and education is key here – people should know what to do as many of them are/will be affected by chronic diseases.

In this regard the role of unions was raised by one of participants and in which way chronically ill patients can fall back on unions. E. Kasilingam said that HR departments were involved in their work but unions should also be considered.

Joke Jaarsma, EFNA President then closed the discussion outlined the recommendations of the MEP Interest Group on this topic set out in the updated Book of Evidence. These are:

  • Supporting EU and national campaigns to work towards adapting social, professional, and consumer environments to help people affected by neurological disorders, minimise their challenges and amplify their strengths
  • Calling for the consistent implementation of the Employment Equality Framework Directive and the European Pillar of Social Rights by member states
  • Supporting the timely implementation of CHRODIS initiatives on at national level by emphasising the economic benefits of reducing stigma and providing employment support for people with chronic conditions
  • Calling on the EU institutions to deliver a revised European Disability Strategy and a European Accessibility Act to deliver benefits for persons with disabilities by removing the barriers within the internal market created by divergent legislation, including barriers to accessing education and the labour market
  • Calling for the EU and its member states to leverage the Youth Employment Initiative as a means of to supporting and funding education, employment, and training, for people with brain, mind, and pain disorders
  • Calling for the EU and its member states to leverage the European Structural and Investment Funds to finance initiatives in the area of inclusive employment, including those with disabilities, and bringing them closer to the labour market

Emmanuelle Grange, Head of Unit, Disability and Inclusion in DG Employment and a keynote speaker was then asked to comment on whether these recommendations were steps in the right direction and how they can they be taken forward.

Ms. Grange answered that the direction is right and political pressure needs to be maintained.

She explained that in the European Commission is in charge of mainstreaming disability in all EU policies. As such her unit coordinates work with other Directorate Generals.

She continued by saying that sickness cannot always be assimilated to disability according to the jurisprudence of the European Court of Justice. Therefore, applying legislation on disability in the field of brain, mind and pain disorders cannot be systematic as there is no EU definition of disability and the recognition of disability by member states differs hugely.

She stressed that awareness raising campaigns are very important. In terms of EU competences, sometimes legislation can be made, but equally Member States competences need to be kept in mind.

She then moved on to talking about a number of relevant EU initiatives in this field:

The Directive has been well transposed by Member States. However, the Commission receives various complaints regarding individual decisions taken by social security systems. Disability complaints are present in this group too. The answer that the EC mostly gives is that unfortunately it cannot deal with it as it is national competences. She informed the audience that a common report is under preparation with DG Justice on the implementation of three non-discrimination directives.

An awareness raising campaign on these three directives will take place in early summer until the second half of 2020. It will be a general campaign dealing with all aspects related to non-discrimination. A specific part of this campaign will deal with disability and reasonable accommodation and will be related to employers. She added that there are often a lot of misunderstandings regarding reasonable accommodation. Therefore, seminars will be organized in Member States and guidelines will be discussed and shared with employers.

Grange remarked that the implementation of the Pillar is one of the big challenges of the coming years. Nonetheless, there is also a strong will of the current EC for the Pillar to be implemented, first by the Member States. She stressed that it’s also a job of civil society to push for it and remind Member States about it.

Grange informed participants that DG EMPL started to assess the current 2010-2020 strategy, which is a long process. While the strategy could always be further improved, it does have positive results already. Public consultations will be run to assess it further. She then asked for an active participation and spreading of the word – it is important to have many replies to show to the EC that this matter matters to the citizens. She added that constructive criticism is welcome too.

A new strategy 2020-2030 will have to be discussed in 2020, taking into account issues such as the Sustainable Development Goals. It is to be seen if more could be done in areas of health and employment.

Grange said that DG EMPL hopes that on 13 March the European Parliament will vote positively in which case the Council could adopt it in April. This would open the doors for its transposition and then implementation in the Member States.

The future programme Invest EU could be also an option to be considered. It brings together, under one roof, the multitude of EU financial instruments currently available to support investment in the EU, making EU funding for investment projects in Europe simpler, more efficient and more flexible.


A question was made from the audience concerning existence of guidelines related to self-employed people who are also discriminated when being ill. E. Grange answered that EC has just adopted recommendations on Social Protection for All including self-employment, ensuring that there is a minimal safety net.

Jaarsma stressed that the patients voice should be loud and clear in all of the plans outlined above. She then handed over to J. van Griensven who concluded by remarking that, on one hand, there were a lot of interesting presentations but on the other, limitations could be observed in areas such as implementation. He added that, nonetheless, it is encouraging because we all work on these issues as patient organizations and policy makers. With the EU elections coming up, he urged everyone to give their vote to people that support our cause. He also found it encouraging to hear DG Employment saying that they are working together as this is the only way to find solutions to problems that span across many policy areas.

He finished by thanking those who made the Interest Group in the past years a success and expressed his hope that participants will help the Group in the next term. He then invited everyone to keep an eye on the release of the updated Book of Evidence and associated policy documents at:



Future of Healthcare in Europe – What next for brain, mind & pain?

Future of Healthcare in Europe – What next for brain, mind & pain?


21 November 2018



Donna Walsh, EFNA Executive Director, opened the meeting and welcomed the participants. She have the apologies of MEP Marian Harkin who was unable to attend on the day, and introduced MEP Merja Kyllönen, from Finland, to make the opening remarks. She mentioned that while the Parliament is often dealing with economic issues, it is also important to widen this perspective to a more social one. This being said, we also need more money for research, innovation and new medications.

Donna Walsh then gave an outline of the format for the meeting. She said that the idea was to explore how the policy priorities of the MEP Interest Group for the next mandate – along with those of its partners – could be integrated and aligned with the priorities and focus of the EU Institutions.

She said that after a successful 4 years, the MEP Interest Group would continue – striving to build on its successes to date. However, she said the policy documents of the group would need to be updated to reflect the work to now, the changing political landscape, new policy priorities and upcoming opportunities. She explained that from 2019-2024, the group would explore:

  • Fighting stigma, isolation and discrimination
  • Ensuring equitable access to treatment, services and supports across the EU
  • Empowering patients for meaningful involvement and engagement

More details can be found in the corresponding presentation.

She then introduced the first part of the meeting where three disease areas would be profiled in terms of assessing their policy priorities for the coming years and how these could link to the work of the Interest Group and the associated EU Institutions.

STROKE: Action Plan for Stroke in Europe 2018-2030

Monique Lindhout, Stroke Alliance for Europe [SAFE], briefly introduced her organisations – which was formed in 2004. She emphasized that, although a lot has been already achieved, stroke still remains the leading cause for disability in EU. She presented the four overarching asks for the Action Plan. These are summarised as:

  • Reduction of absolute number of strokes in Europe by 10%
  • Treat at least 90% of all strokes in a stroke unit
  • Have national plans for stroke
  • Implement national public health strategies aimed at reducing risk factors for stroke.

She also presented more specific recommendations, which could be found in the corresponding presentation and associated documents:
– The popular version of the Stroke Action Plan for Europe 2018-2030 (PDF)
The scientific version of this document (PDF)

She finished by asking for support from the EU institutions and member states to help ensure the goals of the stroke action plan be achieved.


CHRONIC PAIN: Societal Impact of Pain, Thematic Network – Presentation of Framing Paper and Call to Action

Anca Pop, Pain Alliance Europe [PAE] then took the floor to lay out key information on the Thematic Network on the Societal Impact of Pain (SIP) hosted by EU Health Policy Platform. She informed participants about the outcomes achieved so far which include:

  • SIP Framing Paper that identified existing policy and advocacy initiatives relevant to tackle the SIP and background to recommendations
  • SIP Joint Statement, i.e. agreed recommendations that address the gaps identified in the Framing Paper
  • SIP infographic – visual and synthetic representation of the Joint Statement for further communication and engagement

Vittoria Carraro, European Pain Federation [EFIC], talked subsequently about identified priorities, i.e.

  • Indicators
  • Employment
  • Research
  • Education

These topics are included in the Joint Statement that the pain community has recently worked on. She then described the next steps, including collaboration with the EC and SIP partners and endorsers to support implementation, further endorsements that will continue to be sought until 25 January 2019, ensuring link with SIP activities at national level, as well as follow up and continuity through the SIP Stakeholder Group on the EU Health Policy Platform. She then invited those who haven’t endorsed the paper yet to consider doing so. More details can be found in the corresponding presentation and in the joint statement on chronic pain.


ALZHEIMER’S DISEASE: Driving the policy agenda to optimise care for people with Alzheimer’s disease in Europe – Launch of White Paper

EFNA’s President Joke Jaarsma outlined the relevant work and next steps for the Alzheimer’s Disease White Paper – which focuses on ethics, rights to dignity and socio-economic impact. Jina Swartz, MSD, provided further details on the Paper and added that while

ageing diseases will affect to some extend our lifespan, they will especially impact on our quality of live. Frederic Destrebecq, European Brain Council [EBC], complemented the talk by highlighting the White Paper’s policy recommendations. These included:

  • Implementation and revision of national dementia plans
  • Implementation of UN Convention on the Rights of Persons with Disabilities (CRPD)
  • Focus on social policy and social care funding
  • Optimisation of HTA frameworks to cater for disease modifying treatments
  • Support for a Brain Mission as part of Horizon Europe to ensure research funds
  • Continued engagement of people affected by AD and their carers in policy/decision making
  • Appointment of High level EC Coordinator for Neurological Disorders

The presentation finished with some calls to MEPs to use their election campaigns to support the recommendations listed above. This could be done by meeting with national AD groups, coordinating with colleagues, writing to party spokesperson on health, engaging with EC, etc.

More details can be found in the corresponding presentation (PDF) and the White Paper (PDF).



After the presentations, the discussion was introduced by the moderator Kaisa Immonen from the European Patients’ Forum (EPF). She started by talking about EPFs actions related to the EU elections which will focus cross-cutting themes such as patient empowerment, a

ccess, digital health, research and good health policy. The Elections Manifesto is available here.
She emphasized that health should be a top priority for the EU, and that the European Parliament (EP) should hold the Commission accountable for their relevant actions. This is an area of action for the MEP Interest Group moving forward. She then invited panel members to provide their comments.

Ortwin Schulte, Health Attaché, German Permanent Representation to the EU, provided the perspective of Germany which is generally in favour of keeping the appropriate national autonomy for health systems, therefore reflecting a cautious approach when it comes to EU actions in public health. He reminded the audience that Council Presidencies can select topics for prioritization and, while the civil society can have some influence over this process, the actual priority selection is often a personal decision of relevant Ministers. German EU Presidency 2020 task is already active since 5 months ago. The Interest Group should bear these long lead-in times and windows of opportunity for influence in mind.

Tilly Metz, MEP and President of the Multiple Sclerosis Association of Luxembourg started by excusing her MEP colleague Mady Delvaux who had to leave the meeting earlier. She then went on to say that she would like to find out if her country already has a national stroke plan. She agreed with earlier comments that we have to work more on research but also the social impact of this research. She stressed that it is important to work together, with a long term perspective and a holistic approach.

Merja Kyllönen MEP added that it is clear that we have huge challenges in the future when it comes to ageing. She thought that a wider cooperation is needed to give more space to those health issues. A European Year of Welfare and Better Health for Citizens could be envisaged and she will ask this of Council. She also hoped that the next EC will be more vocal about health.

Poppy Ellis Logan representing Attention UK, a non-profit organisation for those affected by ADHD, made a point about the importance of education. She noticed that during several presentations standardised education for all health providers was discussed, with reducing variability across countries in mind. A prevailing notion in education is that ADHD is not a real condition. With this in mind, we need interventions not just for health care providers, but equally for education providers. She then talked about eradicating stigma and how the media can help with this. Indeed, media play a massive part in ADHD awareness and some guidelines should be used. Similarly, this could be applied for other brain, mind, pain disorders to ensure that misinformation and misinterpretation about that condition no longer continues to happen. This could feed in to the work planned by the Interest Group on stigma from 2019.

Viorica Cursaru, Pain Alliance Europe (PAE) Board member from Romania, emphasized that health in Europe is by far one of the most important issues. She supported the idea of nominating a Vice-President for Health to the EC and then added that we should be advocating for nomination of the patient representative within the EC, who would be placed there permanently to advise on all/any health-related discussions.

Kaisa Immonen remarked that the EC wants to advise member states on good practices. Anyone can submit a good practice on the EC portal, including NGOs. She encouraged those knowing of a good practice to submit it and the EC, after reviewing it, can suggest it to EU countries.

Liisa Jutila, a Finnish member of PAE, suggested that we advertise what we do so that everyone sees it in national media, building on earlier discussions. It could be targeting politicians but, given that politicians change, even more so it would be aimed at society at wide.

Wolfgang Oertel, Vice President of the EBC talked about the Scientific Panel for Health of which he is a member. SPH consists of 27 experts who identify challenges in health research. After four years of work they identified the lack of institutions for health research as one of key bottlenecks. Health is a national issue but health research is a European issue. A suggested European Council of Health Research would include the voice of patients.

Elisabetta Vaudano from the Innovative Medicines Initiative (IMI) explained that IMI promotes projects that could deliver data and evidence-based information that can be then used by politicians. She emphasized that a more evidence-based approach to policy-making is needed. She then continued by saying that in IMI patients often work side by side with researches. With time it became clear to everyone that the quality of research produced at the end of the day is much better while keeping patients meaningfully involved. She concluded by saying that the speciality in IMI is to get various perspectives together; not just experts in science but also in data, ethics, legal and regulatory affairs.

Jacobo Santamarta Barral, representing patients with MS, added that mental health issue is important and explained further how patients have to deal not just with stigma from outside, but also from inside – incl. how they can deal with the diagnosis themselves. They have to acknowledge how to deal with their new situation.

Joop van Griensven, President of PAE, wrapped up the meeting by emphasizing that information has to come from individual patients and national patient organizations. It has to be heard at the national level. Young advocates are the future and they are the people who have to provide this information. He stressed that if we don’t do it, no one else will. As a final remark he pointed out how everything is connected – if we do something on stigma, then we do something on education, then on research, etc. He then thanked everyone for attending and adjourned the meeting.



Optimising Patient Relevant Outcome Measures for sustainable healthcare systems and strong economies

Optimising Patient Relevant Outcome Measures for sustainable healthcare systems and strong economies


20 June 2018

The meeting was opened by host MEP Danuta Jazlowiecka.

Cathalijne van Doorne and Joop van Griensven set the scene.

MEP Danuta Jazlowiecka

MEP Danuta Jazlowiecka

Cathalijne van Doorne, Euro Ataxia

Cathalijne, a person affected by ataxia, gave some examples of how what matters most to patients is not always the same as what matters most to researchers. She spoke about how the distance walked was used as an outcome measure when testing the effectiveness of an ataxia treatment. However, she said, that patients are more concerned with the ability to talk. She explained: “I did a survey on the most burdensome symptoms. Not being able to speak clearly is the most burdensome symptom. Not being able to communicate with your family and friends.”

Joop, a person living with fibromyalgia, spoke about how overall functionality and the ability to stay at work was hugely important to those affected by chronic pain. He spoke about how being unable to work impacted on quality of life, including decreased income and increased isolation. He said the EU could play a role by ensuring the European Social Pillar and the European Semester were optimised so that those living with brain, mind and pain disorders were retained, rehabilitated and/or reintegrated into the workplace – if desired.
The results of a survey by Pain Alliance Europe on this topic will be available soon.

Left: Laure Delbecque. Right: Donna Walsh

After these opening presentations, the first keynote speaker was then introduced: Laure Delbecque, Associate Director, Patient Reported Outcomes, Pharmerit International. She spoke about the role that policy-makers could play in ensuring that Patient Relevant Outcomes Measures [PROMs] are used to better understand and assess patient experience. She said that the regulators and, an increasing number of, payors were prepared to use PROMs. However, she encouraged policy-makers to think beyond clinical trials, and to support the use of PROMs via exit interviews, qualitative research, wearables, preference studies, etc.

The moderator, Donna Walsh – EFNA Executive Director, then asked the panel to contribute their thoughts on how PROMs could be better integrated into R&D, but more specifically in policy and decision-making.

Kaisa Immonen, Director of Policy at the European Patients’ Forum said she preferred to speak about Patient Preferred Outcomes. She said groups like ICHOM and the OECD were committed to working on this topic – but emphasised that high level leadership was required to translate recommendations to actions. She called for obligatory consultation with patients bringing a diverse perspective.

The next panelist was Christopher Bidad, Senior Director, Regional Health and Value Lead, Patient and Health Impact at Pfizer Inc. He said that industry was working more on collecting Patient Relevant Outcomes Measures, which was being enabled by improvements in technology. He called on the EU to further support the development of such technologies and the usage of the results generated. However, he called on the regulators and payors to broaden the scope of the accepted evidence, to encourage industry to continue to collect this data. A clear path forward is required, he said, and incentives could be considered to encourage the collection and use of these outcomes.

Vinciane Quoidbach, Research Project Manager at the European Brain Council, spoke about their Value of Treatment project and its innovative approach in mapping the patient journey and identifying the treatment gaps throughout the care pathway. She said it was clear that treating patients in their preferred way, would lead to decreases in both cost and burden of disease.

Ruth Zaslansky

Ruth Zaslansky

The final speaker on the panel, Ruth Zaslansky of the Pain-Out project, spoke about how collected patient report outcomes, on the treatment of post-operative pain, allowed for the building of extensive data registries which improved clinical decision making. This real-world data could be used for policy making and decision-making, and she called on the EU to support further projects in this field.

Donna Walsh wrapped up the panel by saying there was lot of food for thought which the group could take further in subsequent meetings and via their ongoing, related initiatives.

Left to right: Anna Graca, Sam Kyman and Joke Jaarsma

The second panel was moderated by Sam Kynman of the European Pain Federation.

He introduced keynote speaker: Anna Graca of the European Commission, who presented the draft framework of the HorizonEurope funding framework.

She emphasised that there would be a new approach to partnership and called for patient organisations to be proactive in positioning themselves as key partners in project consortia. She also said there would be an ‘inventory’ of current partnerships conducted and asked all stakeholders to contribute to this task.

She emphasised the new mechanism of Missions. These missions, she said, will relate the EU’s research and innovation to society and citizens’ needs, with strong visibility and impact. She mentioned that a proposed ‘brain’ mission had already been produced by the European Brain Council, and that a similar document had been received from the epilepsy community. She said the Commission expect to be bombarded by these suggested missions.

She mentioned that the strategic planning to prepare first work programmes under Horizon Europe, including co-design of missions and setting up of partnerships, would take place in the second half of 2018 and throughout 2019 – and she encouraged the brain, mind and pain community to get involved.

Joke Jaarsma, EFNA President replied to this presentation. She said:

  • We welcome the improvements suggested in the “Horizon Europe” proposal, including increased funding, but we believe that this is not enough to meet global challenges, as well as to address the historically low success rate that is currently seen in Horizon 2020 – particularly in the field of brain, mind and pain disorders.
  • We would like to see a new budget of at least 120 billion euro to meet the ambitions formulated in the FP9 proposal.
  • We are concerned about the provisional budget of 7.7 billion euro allocated to the “Health” cluster under Pillar II. We believe that adopting the proposal as it stands will be insufficient to effectively address the societal challenges associated with healthcare in the field of brain, mind and pain disorders.
  • We are encouraged by the increased budget for the European Social Fund [ESF+]. However, this is to be spread across a wider range of activities – and we need to ensure that actions in the area of health are supported and the instrument promoted at member state level for this purpose.
  • We realise that health remains a national competence but we would like to see ongoing and increased support for health-related actions where cross border cooperation brings added value e.g. work in the area of chronic diseases, HTA, etc. This should be reflected in the proposal.
  • We call for a mission on Brain

In reply, Anna Graca explained that the budget increase was already very substantial as the UK was leaving the EU and so their contribution was no longer included. So, an increase in the overall budget would be difficult – but perhaps it could be reallocated/reprioritised. She also suggested that less siloed thinking should be pursued.

The next panelist was Madga Chelbus of EFPIA. She mentioned the IMI’s model of patient participation as a framework which could be replicated for other EU funded projects. She specifically mentioned two IMI projects which were working to create improved processes for patient involvement in R&D, but also in broader policy and decision- making:

The final panelist was Mark Fladrich, CCO of Grunenthal who spoke about Grunenthal’s support for the Brain, Mind and Pain Patient-Centred Innovation Grant.

The grant aims to create an environment where patient centricity is the basis for future initiatives. This will implicitly contribute towards creating a sense of innovation, with direct impact on patients’ needs, and towards increasing awareness of chronic pain conditions and neurological disorders.

The awardees of the grant were announced over a lunch which followed the meeting.
Find out more here.



Jacobo Santamarta Barral

When faced with a neuro-degenerative disease the diagnosis may look like the hardest part but it is not. You may feel bad at that moment but, even though you do not know what lies ahead, things are not going to get any better.

Jacobo Santamarta Barral

Jacobo Santamarta Barral

I was 22 years old when I got diagnosed and nothing would have lead me to expect how bad my situation could become. It was not until five years later that I started having some serious symptoms and I realised that they were just the beginning. I had finished a Masters Degree in Law and was ready to start what I believed was going to be an exciting work career.

That relapse kept me from doing anything at all for around a year. This made me understand that those symptoms were something I had to live with while trying to have a normal life- or rather, the life I was supposed to live.

So I got back on track, looking for a job; trying not to let my symptoms interfere with what I had prepared my whole life to do. For more than five years I developed my job the best I could but my situation got worse as time went by and eventually I had to retire. Knowing that I was not going to be able to work anymore was the worst part of all since I felt my life would lose its meaning.

It took me just a couple of months to realize, however, that maybe I was not meant to do what I thought. So I began to get involved into trying to make life easier for those in the same situation as myself; advocating for people who face such a devastating diagnosis.



Peter Boyd

To the outside world I had it all – a management degree, my own home, a brilliant family, a well-paid job I loved, a good group of friends and a beautiful girl I had just begun to see.

I had even found the strength of character and of mind to do the lonely hours of work to return to playing football after two ruptured cruciate ligaments in my right knee aged 16 and 20. I’d also had 60% of the cartilage in that same knee removed and still played League of Ireland for Dublin City. I had learned to work with and supervise people in 5-star resorts in Scotland and France and pubs in Dublin that held 900 people.

Peter Boyd

Peter Boyd

But, diagnosed with arthritis at 26, I was destroyed.

Depression is the most common comorbidity of MSDs and I live with it every day. When I owned it, it was the 10th diagnosis I had received alongside all the other systemic auto-immune conditions.

Forced to leave employment I became isolated, lost my self-confidence, my self-esteem, my financial security, my girlfriend, my friends and, for a time, hope. For two years I wallowed and grieved for everything I lost, took two years out of my life.

However, with support from my national and European networks I rebuilt myself. I had to retrain for jobs more suitable for a person with an MSD and I enjoyed being back in education. With a greater empathy and understanding of the world around me I became a better person.

I am now a better qualified, more rounded, more employable and better person than ever before. Unfortunately, the employers of Ireland and Europe view the large gap in my CV as a problem rather than the opportunity I’ve taken it to be.

I am ready, willing and capable of working. All I ask is for the opportunity to show that.


‘How can the EU: #MakeWorkWork  for young people affected by brain, mind and pain conditions?’

‘How can the EU: #MakeWorkWork for young people affected by brain, mind and pain conditions?’


21 February 2018

Marian Harkin MEP opened the meeting by telling participants that, over the last century, the primary burden of disease in children and young people has shifted from infectious diseases towards chronic conditions.

She said the good news was that medical care has advanced so that most young people in chronic ill-health are surviving to become adults. However, many young people living with chronic pain or a neurological condition still struggle to meet some of the challenges of becoming independent adults in modern society. And finding a job is especially challenging in times when youth unemployment across Europe is so high.

She referenced the Written Declaration she launched with the Interest Group in 2016 and said, that although this was not passed, the asks therein would continue to be taken forward.

See more here:

Jacobo Santamarta Barral

Jacobo Santamarta Barral

She then handed over to the first two speakers who spoke about their personal experience of being diagnosed with a neurological and chronic pain disorder, respectively, and the impact this had on their ability to work.

Both speakers spoke about how the invisible nature of their diseases made it even more difficult for employers and colleagues to understand the challenges faced. In MS, for example, 80% stop working within 15 years of diagnosis.

They also spoke about the value of patient organisations in supporting young people diagnosed with such chronic conditions, with Jacobo Santamarta Barral presenting the work of the European Multiple Sclerosis Platform on the topic. He mentioned their projects – such as: Ready to Work, Paving the Path to Participation, Believe and Achieve and so on.
See more here:

Peter Boyd of Young PARE (People living with Arthritis and Rheumatism in Europe), spoke about the economic impact: ‘Last year’s (10 year record high) EU GDP growth of 2.4% was almost entirely wiped out by the 2% lost EVERY YEAR through Musculoskeletal disorders.’

Peter Boyd

Peter Boyd

He called on the EU to create employment schemes, which are seen as long-term investments and not short-term costs. And, at a national level, he asked that current structures which disincentive return to work – often due to loss of benefits – be overhauled.

The full testimonies of Peter and Jacobo can be found here.

These powerful opening presentations were followed by a discussion – chaired by EFNA Executive Director, Donna Walsh – where three panelists were asked to make three recommendations to the EU Institutions on how the situation can be improved.


Marijeta Mojašević

Marijeta Mojašević

Marijeta Mojašević, Member of the Youth Board at the European Network of Independent Living – Youth said that the EU should:

  • Work on raising awareness amongst employers about nature of neurological disorders and the needs for those affected in the workplace.
  • Encourage employers to meet these needs through reasonable accommodations in the workplace.
  • Widely share best practice from member state on accommodating young people affected by chronic conditions in the workplace – including campaigns targeting wider society.
Yolita Pavlova, EPF Youth Group

Yolita Pavlova

Yolita Pavlova of the European Patients’ Forum – Youth Group asked that the EU recognise that:

  • Young patients are young people.
  • Reasonable adjustments in the work environment can support young patients with chronic conditions to improve their efficiency. These could be locating a work station near the toilets, providing a quiet room or home office possibilities.
  • All young people with chronic conditions deserve a chance to prove themselves as productive employees.

She also mentioned the important of ensuring that young people were supported to disclose their illness, with assurances that this would not affect their chances of gaining or retaining employment.

Hans van de Velde of European Brain @ Work [EBW] spoke about how this initiative is focussed on the 10% of the European population who have a ‘special brain’ that can cause problems in accessing good work – including those with autism, dyslexia, giftedness, etc. EBW facilitates a network of ambassadors who provide information to companies, educational institutions and other stakeholders in the field of work. They can point out possibilities to the employer and the employee and offer a helping hand in choosing support. This initiative was supported by a grant from the EU’s Erasmus+. He called for:

  • Further EU funding to support such initiatives, but also the simplification of the application process.
  • An extension of the approach to working with partnership. He said the EU must work with those affected on creating solutions.

This was followed by contributions from two further MEPs: Jana Zitnanska and Rory Palmer.


Jana Zitnanska MEP

MEP Zitnanska explained that she is the rapporteur on a new report entitled: Pathways for the Reintegration of those recovering from injury and illness into quality employment.

She said that she would be presenting the draft report at the Parliament’s Employment and Social Affairs committee the next day, and asked the MEP Interest Group to feedback on its content.

She mentioned that as well as reintegration, the report would also look at prevention and early intervention.

She said that she would ensure the sharing of best practices was included, but made it clear that support from the Member States would be required to ensure that the report could be leveraged and optimised.


Rory Palmer MEP

MEP Rory Palmer, then said he was also open to ensuring feedback from the Interest Group was factored into the discussion of the report – in his role as shadow rapporteur.

He also added some additional suggestions to the discussion, including:

  • Focusing on providing tools for SMEs to better support young workers with chronic conditions.
  • Providing support for people living with disabilities to run for elected office and providing them with opportunity to raise the challenges faced directly.
  • He also spoke about a new initiative which he is coordinating – a focus group on Dying to Work, which was hoping to create legislation to protect the employment status of those with a terminal illness

Marian Harkin MEP added some additional suggestions to the discussions including:

  • Optimising the EU Social Funds and EU Structural Funds to support employers in creating more inclusive workplaces, and opportunities for young people with chronic conditions.
  • Using the European Semester process to make recommendations to Member States re. the economic benefits of providing employment supports to young people with chronic conditions.
  • Exploring the legislation contained within the European Social Pillar and ensuring that this is implemented by the Member States – including opportunities in the areas of work-life balance (carers leave). Neil Betteridge of the Global Alliance for Patient Access also spoke about how there should be a discussion on disability leave (not just sickness leave).
  • Ensuring the European Parliament takes a lead in employing people with disabilities/chronic conditions.

The floor was then opened and a number of contributions made – including input from Benedicte Faure of the European Chronic Disease Alliance, who presented the recently developed Call to Action to enhance labour opportunities for people with chronic diseases.

She said this document included recommendations based around four key pillars: Prevention and Early Detection, Improving Integration of Care, Favourable Environments and Training of Employers. See more at:

Joop van Griensven, President of Pain Alliance Europe, said that the EU Health Policy Platform could be further optimised to share best practice and other solutions, and encouraged the Interest Group to be active there.

Donna Walsh said that this could be taken forward via Chrodis+, the second EU joint action of chronic diseases, where EFNA are involved as partners in the work package on employment and chronic disease.

Marian Harkin then welcomed the final speaker of the day: Emmanuelle Grange, Head of Unit, Disability and Inclusion, DG Employment, Social Affairs and Inclusion, European Commission.

(Left: Marian Harkin MEP, Right: Emmanuelle Grange, DG Employment)

(Left: Marian Harkin MEP, Right: Emmanuelle Grange, DG Employment)

Ms Grange informed the group of a number of Commission initiatives, and made some recommendations to the group:

  • The Commission is finalising a call for proposals as part of the European Programme for Social Innovation. This will provide small grants to NGOs which could be used to support work in this space.
  • DG EMPL and DG JUST are working together to create an awareness campaign, targeting employers, on discrimination at work, as part of the ‘EU Empowers’ programme. This will focus on discrimination broadly, but will include disability.
  • The Youth Employment Initiative could be leveraged, as well as the upcoming Accessibility Act (which may be pared down at the request of the Member States).
  • More focus needed on securing support for EU initiatives at the national level. She mentioned how a lack of appetite from the Council has scuppered attempts to introduce Directives in this area. This has meant the refusal of reasonable accommodation is not seen as discrimination. Marian Harkin added that the lack of a definition of ‘disability’ allows means implementing legislation can be difficult.
  • She also said the Member States needed to be pushed to use the EU Structural Funds to finance initiatives in the area of inclusive employment. The European Semester process could play a role here.
  • She said the EU disability strategy would be reviewed and encouraged the Interest Group to feed into this consultation.

Marian Harkin closed the meeting by thanking all involved.
Donna Walsh thanked Marian Harkin and her team for their work in preparing and hosting the event, and said the Interest Group will work on a ‘next steps’ work programme to follow up and advance the discussion.

You can view an album of photographs from the event here.

Check back soon to see more!


Brain, Mind and Pain Grant 2018 – Call for Proposals

Brain, Mind and Pain Grant 2018 – Call for Proposals

Bringing the innovation closer to patients, 2 leading organizations – Pain Alliance Europe and Grünenthal – are proud to introduce you to their 1st Brain, Mind, and Pain Patient-Centred Innovation Grant, and announce the official opening of the Call for Proposals and the opening of the application period.

For 2018, the Call for Proposals addresses the Grant theme:

“Overcoming problems in access to treatments”

You are invited to consult the grant documentation and to submit your proposal via the Application Form available online starting 1st September 2017. The deadline for submitting the applications is 31 December 2017.

Please consult the Call for Proposals for all details concerning application rules and eligibility criteria.


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