Crowne Plaza Brussels Airport Hotel, Wednesday, April 9^th

BACKGROUND

EFNA hosts annual Stronger Connected workshops to unite the neurology community around key themes. The 2025 focus is “Enhancing Health Literacy in Neurological Disorders.” Health literacy is critical in managing neurological disorders but remains low among the general population. Patient Experience: 85% felt their symptoms were not believed by medical professionals. 67% were initially misdiagnosed; 56% struggled to describe symptoms. Neurodivergent individuals face added challenges in communication and symptom awareness.

KEY FINDINGS

Health Literacy Levels:

Attendees rated themselves 7.3/10 in health and digital literacy—still low considering their expertise. There’s a major gap in awareness about support tools in practice for example the European Disability Card.

Communication Gaps:

Patients often don’t retain information at diagnosis due to emotional shock.

Trust, compassion, and concise communication from healthcare providers are essential.

Digital Tools:

Benefits include improved monitoring, efficiency, and personalized care.

Barriers: privacy, accessibility, interoperability, and provider training.

Transition in Care:

Transition from paediatric to adult care is often poorly managed, leading to poor continuity.

Tools for Health Understanding:

Apps, patient journeys, websites, infographics, and patient testimonials cited as helpful.

Best Communication Practices:

Eye contact, empathy, specialist nurse support, shared decision-making, and concise messaging.

Stakeholder Engagement:

Patients, carers, clinicians, policymakers, and educators must be included via collaborative platforms.

Recommendations & Action Points:

Immediate Actions:

• Develop regional multidisciplinary teams focused on health literacy.
• Establish a working group from workshop attendees to continue the initiative.

Medium-Term Goals:

• Increase awareness and access to digital health tools and support services.
• Promote creation and use of patient-friendly educational resources and glossaries.

Long-Term Strategy:

• Launch a multistakeholder conference to build a united health literacy action plan.
• Integrate health literacy education in medical training and system processes.

Next Steps (Planned):

October 2025: Second workshop (with clinicians) and MEP Interest Group meeting on health literacy.

Identify top 5 cross-cutting needs of the neurology patient community for targeted action.

INTRODUCTION

In recent years, the European Federation of Neurological Associations (EFNA) has brought together representatives of our membership, Community Advisory Board and the wider neurology community for annual ‘Stronger Connected’ workshops. Previous themes have included implementation of the WHO’s Intersectoral Global Action Plan on Epilepsy and other Neurological Conditions (IGAP) and awareness raising through campaigns. In 2025, two Stronger Connected workshops will take place, under the theme of “Enhancing Health Literacy in Neurological Disorders.”

The first workshop, which took place on April 9^th, at the Crowne Plaza Brussels Airport Hotel, was open to members of the neurology patient and carer community. 20 participants attended from across Europe, representing the areas of Ataxia, epilepsy, Myasthenia Gravis (MG), Multiple Sclerosis (MS), migraine and headache, Huntington’s Disease, Parkinsons’ Disease, neuromuscular disorders, stroke, narcolepsy and dystonia.

The second workshop, to be held in collaboration with the European Academy of Neurology (EAN), will take place in October and will involve clinicians as well as the many of the attendees of the first event.

Health literacy is a critical enabler for individuals to better understand their neurological conditions, communicate their symptoms more effectively, and actively participate in their care journey. Unfortunately, according to an EFNA survey on the invisible issues of neurology (2024): 85% report medical professionals did not believe the extent or severity of their symptoms, 83% did not receive adequate treatment because they were not taken seriously and 56% had difficulty describing symptoms to their doctor, which in part led to 67% of people being initially misdiagnosed!

The workshop was opened by EFNA President, Astri Arnesen, who welcomed attendees and reminded everyone of the benefit of bringing such a group together in-person, where the best ideas can emerge.

The group were invited to participate in an interactive session using Slido. To begin, they were asked “What does health literacy mean to you?”. As shown below, the most frequent answers were ‘knowledge’, ‘understanding’, ‘empowerment’ and ‘power’.

When asked which invisible neurological issues people view as the most difficult to describe/explain the responses suggest that the more invisible the symptom, the more difficult it is to explain.

The invisible nature of these symptoms is challenging for both patient and health care professionals.

Additional challenges were identified for neurodivergent people, as they can have difficulty expressing themselves but also face sensory difficulties that can make it hard to identify the feelings and symptoms they are experiencing in their own body.
It was suggested that hypersensitivity is an issue that should be included in the above list.

Workshop participants were then asked how they view their own level of health literacy. The result was quite high, with an average of 7.3/10, but it was acknowledged that the audience is made up of patient experts. If this group rates themselves at 7.3 it is likely that the general population would rate much lower. In terms of digital health literacy, the group again ranked themselves with an average of 7.3/10. However, in this instance there was a broader range within the room, with 21% of attendees rating themselves at just 5/10 and a further 21% rating themselves at 9/10. This variance is due to differing levels of general digital skills, often caused by generational differences.

The group discussed the importance of navigating to correct and reliable information. They feel doctors play a role in directing patients towards the support of patient organisations at the time of diagnosis. If patients search online for their condition, they often find unreliable or concerning information so being pointed directly to reputable groups with accurate information is vital.

Further issues relating to communication with doctors at the time of diagnosis were discussed. One participant shared their experience of hearing confirmation of a diagnosis and how no other information given by the doctor at that appointment was absorbed due to their shock and the need to process the news. Therefore, follow-up communication/consultation is necessary and giving reading materials that can be taken away is helpful.

Some within the group feel like they see a lot of negative stories online and how helpful it would be to see more positive patient testimonials online a way of bringing hope to their communities.

The group were asked about their familiarity with the European Disability Card and what it does and does not cover. Only 18% are familiar, with 47% unsure and 35% completely unfamiliar. This suggests that even among patient experts, knowledge of entitlements within Europe could be greatly improved.

A Slido quiz was used to assess the group’s health literacy in terms of medical terminology. Over a series of questions, the group were asked to match the neurological term to the most likely related condition or process. Results were generally good but did lead the group to feel that their health literacy may not be as good as they had earlier thought! The group universally agreed that the questions would have been more easily answered if the neurological terms had been explained in lay language.

PRESENTATIONS

Achille Dunne, Scientific Director, Merck – ‘Collaboration with patient partners and data scientists to develop a lexicon for Artificial Intelligence-enhanced medical communication’

Achille presented a collaboration with patient partners and data scientists to develop a lexicon for AI enhanced medical communication, using uses myasthenia gravis (MG) and patients with myasthenia gravis as an example.
There is growing recognition across the pharmaceutical and scientific publishing industries of the need for Patient-Led Summaries (PLSs), which make healthcare research much more understandable to non-specialist audiences. That can include not only patients but also non-specialist HCPs, for example. Effective communication for non-specialist audiences requires clear, jargon free and consistent language. A patient lexicon can help to develop those effective communication pieces, especially when co-created with patient partners to help ensure consistent use of appropriate terms and language that is meaningful to patients and other audiences.
The team began by reviewing information about the lived experience of MG through published literature, patient websites and patient social media posts in order to understand the actual language that patients are using. They then held a two-hour workshop with four people living with MG to help co-create the final lexicon. They then developed an AI app to apply the lexicon to other materials using a large language model which generates a directory of lexicon term variations. This app could then analyse documents and make recommendations wherever it identified terminology that could be made easier to understand. The final lexicon that was developed in partnership with the patient partners covers 118 terms related to myasthenia gravis treatments and clinical trials.
The company will use the lexicon to create content for people living with MG and improve communication when working with patient partners. Patients reported that they valued the experience of engaging in the development of the lexicon and agreed that the outputs from the project could have a positive impact on stakeholders and that the patient lexicon project reflected the needs and interests of the target audience.

Mikele Epperly, Global Integrated Program Leader, Brain Health, Roche – ‘Digital Solutions Supporting the Patient Journey’

Mikele presented an overview of digital health tools, their benefits and challenges, and a look at what Roche doing in this space.

She began by listing commonly used digital health tools: appointment scheduling, telehealth consultation, patient portals (being able to see medical exam summaries, test results, and e-mail with the provider), medication management (adherence applications or scheduling refills) and educational resources (e.g. online libraries of information about diseases and treatments).

She then named five tools that are increasingly being used at different points of the patient journey: AI chat bots (available 24/7 and you can interact with them regarding symptoms), wearable devices, remote patient monitoring (which could be through a wearable device but then sends information to the health care provider), predictive analytics and virtual reality (this can be used for pain management, surgical training, even just reducing boredom for paediatric patients when they’re participating in clinical trials or having infusions).

The benefits of these tools are that they can increase efficiency, reduce cost, improve care coordination across the care team, improve patient engagement and enhance personalised medicine. However, Mikele also listed a variety of barriers that hinder their widespread adoption:

• Data security and privacy: Concern about what information being used for and by whom which can be mitigated if the patient owns the data and communicates it with those that they choose.
• Equity and accessibility: These digital health tools should be available for all, but there are subpopulations that have less access, like the elderly or people in certain geographic regions.
• Provider training and support: There are varying skill sets and digital literacy amongst providers
• Interoperability and integration of the data: Patients want to be able to choose between different types of applications and tools but trying to integrate so many different choices into one place for a provider or a patient to use can be a big challenge.
• Cost and financial issues or concerns

Mikele believes that despite these challenges, the promise that digital health tools offer as far as increased patient engagement, increased patient empowerment, and ultimately improved patient outcomes is enough motivation to try to overcome these barriers.

She believes that we need to involve patients and their carers in the development process, to co-create these solutions with the pharma or tech companies. We don’t need to measure everything that a digital tool could possibly measure, just what matters most to the user.

The health data that’s collected through the digital tools by Roche, is used as digital biomarkers for research. A benefit of an app they developed for MS patients was that they gained much more information about patients in-between their visits and it generated real-world insights about treatment. Such tools can also potentially reduce the burden of those involved in clinical trials by preventing some in-person visits.

Mikele finished by reiterating that it’s crucial for patients and patient organisations to drive and create these innovative solutions in order to ensure that the outcomes of tomorrow are better than they are today.

Sian O’Neill, PTC Therapeutics – ‘Transition from paediatric care to adult care in Duchenne muscular dystrophy: The Young Adult Experience’

Within rare disease, paediatric populations are now progressing to adult care because of innovative treatments and improved standards of care. However, adult centres are not ready for them because they they’re not expecting to see these paediatric patients in their clinic. Sian presented a project that was based on understanding the experiences of a teenager/young adult with Duchenne muscular dystrophy as they transition from paediatric care to adult care.

PTC conducted in-depth interviews with 26 families from three countries and looked at their transition experience. Based on the insights gained, they developed a survey which was completed by 118 families across nine European countries. Based on the results, they created a young working group, and an adult working group.

They found that transition is rushed and unorganised. There is a lack of a standardised transition process. They heard of teenagers arriving for their appointment to a clinic at the age of 16 and been giving a reference to go to the adult services without any preparation whatsoever. Now being treated with adult settings, clinicians commonly do not have the information or expertise for their disease area. As the HCPs didn’t know anything about their rare disease, the patients had to explain it repeatedly.

The research also found that people don’t know where to find credible information. Often the type of information being shared was not helpful because it was not aimed at the age group or the ability of the person to understand.

They found that focusing on goals (such as to have a job or meet more friends) really improved the outlook for patients, and that mental health supports are needed.

Sian believes that there is huge room for improvement in health literacy, in all areas; in access, understanding, being able to appraise information, and being able to explain your disease area when you transfer from paediatric to adult care. She believes the greatest source of support is through patient or advocacy organisations, because these are the ‘go to’ place for many families. However, she believes a lot more can be done by patient organisations to connect the clinicians with the patients and caregivers when they are developing guidelines and processes for transitioning from paediatric to adult care.

Suzanne Bruins, Director Patient Advocacy & Government Affairs, Alexion – AstraZeneca Rare Disease – ‘Patient-Centred Care in generalized myasthenia gravis (gMG): Enablers, Best Practices, and Tools’

Myasthenia Gravis (MG) is a rare neuromuscular disorder that causes muscle weaknesses and there’s a lot of variation in how it manifests, in terms of severity and frequency.

Suzanne presented a project that aimed to understand the experience of living with Generalised Myasthenia Gravis (gMG) in Denmark, Switzerland and Austria. Their research found that the most impactful symptoms for people living with this disease are general fatigue and drooping of the eyelids, followed by limb weakness and blurred or double vision. It’s not easy for gMG patients to convey the impact of the disease because these symptoms are difficult to explain.

Suzanne describes the gMG patient journey as being a journey of misunderstanding. Although the time to diagnosis may not be long, the journey is difficult because people often feel that they are not taken seriously (something that doesn’t stop once they have their diagnosis). The main source of information for patients is their physician but 70% of respondents say they do not, or rarely, discuss the burden of gMG on their lives with them. People living with gMG feel they would benefit from longer visits to their HCPs and wish to discuss the impact of gMG on their quality of life.

Suzanne outlined the key elements of patient-centred care as: 1) Prioritisation of individual needs, 2) Compassionate communication, 3) Trust and empowerment and 4) Integrated care approach.

DISCUSSION

Following these presentations, a workshop activity took place with the workshop participants holding discussions and giving feedback within groups. The first topic of discussion was “What tools have helped you to understand your health and treatment options?” The tools the groups came up with were as follows:

• Apps
  One participant uses an MS app developed by her clinic that asks her questions about how she is feeling. Based on her responses she will receive a call from the MS nurse there. Another participant commented that there are over 30+ apps for patients with Parkinson’s Disease.

• Websites
  As discussed previously, the quality and reliability of websites varies. It is best to seek advice from recognised patient organisations.
• Patient journeys
  Patient Journeys are service improvement tools that capture the natural history of a condition and the needs of patients through the day-to-day experiences and life-lens of people living with a condition.
• Workshops
• Disease-specific journals
• Physio-hub
  The Dystonia Physio Hub was developed by Dystonia Europe for use by both physiotherapists and dystonia patients. It provides a video library of exercises for people with cervical dystonia to correct the position of the head, facilitate movement and reduce tension and pain.
• Patient testimonials
  Patient testimonials are seen as a reliable source of information and can offer hope and reassurance.
• Treatment guidelines
  There should be separate versions for doctors and patients.
• Visuals and infographics
  These are a good way to translate complex information and overcome language barriers.

The second area of discussion was around “How have clinicians communicated in ways that made you feel heard and understood?”

• End of life care

Patients and families should be involved in planning and decision-making

• Clinicians interacting outside of a clinical setting

Clinicians attending and participating in events such as patient workshops creates a positive experience and opportunity for interaction

• Communicating concisely

It was suggested that people can remember a maximum of five key points from a conversation. Therefore, it was suggested that HCPs keep to key points and reiterate those key points at the end of a consultation.

• Delivery of diagnosis

Receiving a diagnosis can be a traumatic experience. It was suggested that diagnosis should, in certain circumstances, be delivered together with a psychologist or case manager.

• Specialist nurses

Involvement of specialist nurses is seen as extremely helpful. They can help to prepare patients ahead of diagnosis but can also continue to provide support post-diagnosis. Specialist nurses are seen as more sensitive in their communications. They can help to maintain relationships between HCPs and patients between appointments.

• Communication positioning / eye contact

Positive experiences involved HCPs being face-to-face with their patient and maintaining eye-contact, rather than looking at a screen! Patients must be treated as equals and involved in decision-making.

The group then discussed and shared examples of how shared-decision making has worked in their care. The group suggested that:

• A multidisciplinary approach is best for both planning treatments and ongoing support. Decisions should involve all stakeholders.
• Early conversations to shape care pathways are best, and for young people the transition of care should also involve schools.
• It is best for patients to be accompanied to appointments by a family member, as they are often better placed to advocate, challenge and listen.

We then considered the questions “Who are the stakeholders in this area” and “How do we engage with them?”

The primary stakeholders are the patients themselves. Other stakeholders identified were patient organisations, family and caregivers, case managers, educational institutions, governing bodies (ministries of health, hospital trusts (UK), local health services, policy makers), European Reference Networks.

Regarding engagement with these stakeholders, a large focus was placed on collaboration- bringing stakeholders together (for example at conferences, including different perspectives on panels) and through multi-stakeholder projects.

It was seen as important that we as patients show our faces, share our stories and are seen as human beings rather than diseases to be treated.

We can share patient-generated information, through surveys or workshops and should publish articles or reports on our collective situations when possible. Use could also be made of mass media.

NEXT STEPS

The group suggested that regional, multidisciplinary teams should be established to deal with the topic of health literacy. A group could be established from among those present to build on the day’s workshop and establish a plan for further action. A multistakeholder conference was also suggested.
The group felt that by taking both a top-down (EFNA) and bottom-up (regional groups) approach we would meet in the middle for optimal success.

Already planned is a meeting of the MEP Interest Group on Brain Health and Neurological Conditions, on the topic of health literacy, taking place in October 2025. The second part of this Stronger Connect Workshop will also take place at that time, held in conjunction with the European Academy of Neurology and featuring the involvement of clinicians.
It was broadly agreed that that workshop should allow more time for practical planning, and it would be helpful to identify the top 5 cross-cutting needs from within our community.
The group looks forward to hearing the perspective of the clinicians and learning how we as patients can communicate better to optimise outcomes.

The Stronger Connected Workshop was kindly supported by:

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