Health Literacy in Action:
Enhancing Patient Outcomes and Policy Impact
Date: October 16, 2025
Location: EU Parliament. Brussels
This meeting of the MEP Interest Group on Brain Health and Neurological Conditions brought together Members of the European Parliament, healthcare professionals, patient advocates, researchers, and policy experts to explore how improving health literacy can transform outcomes for individuals living with brain health and neurological conditions. The meeting explored actionable strategies to empower patients, strengthen healthcare systems, and inform more effective EU-level policy.
| EXECUTIVE SUMMARY
Based on 2024 data from EFNA (n=4800 respondents across Europe), 56% of people living with a neurological condition had difficulty expressing symptoms to healthcare professionals, which contributed in part to 67% of people being initially misdiagnosed. Three major causes identified: (1) Health Literacy: the ability to find, understand and use health information, (2) communication issues in healthcare settings notably not enough time as a result of workforce shortage, and (3) the complex nature of neurological conditions requiring multiple healthcare professionals particularly neurologist doctors, specialised neurology nurse practitioners, genetic counsellors/medical geneticists and rehabilitation specialists. Firm support from MEPs:
Overall, the call from the neurology community at this meeting was to ensure health literacy and stakeholder involvement, especially patients and caregivers, are embedded in any forthcoming Brain or Neurological Health Strategy for Europe. In addition, while the Budget for Europe is under review, we call for a designated health budget. In response, MEPs reaffirmed their position, specifically that MEPs, especially those on the Health Committee, firmly support the need for a health budget, and advised those in the room and online to now address and engage the EU Commission on the need for a dedicated health budget. |
In his keynote speech, MEP Tomislav Sokol (EPP, Croatia), host of today’s meeting, states that equal access to medicines and treatments across Europe is essential. “We cannot have a postcode lottery”, he said. An obligation has been introduced to ensure that all innovative medicines are made available across all nation-states within one year.
Turning to the subject of health literacy, MEP Sokol said, “Health literacy is extremely important because it directly impacts health outcomes.”
MEP Sokol calls for health literacy to be prioritised in European policy and to be adequately funded. 70% of the public has limited health literacy, leading to delayed or missed diagnoses. He states that this is a huge problem. If a diagnosis is delayed by years, it will have a lasting adverse effect.
MEP Sokol concluded by saying that to achieve change, we need a strong European health budget. There is now no health programme within the budget, and the Commission has indicated that health will be included under different areas. MEP Sokol argues that to protect and prioritise health, we need a ringfenced health budget. Without this, health will fall between the cracks and fail to be prioritised. He encourages civil society- including patient groups such as EFNA- to address the Commission with our call for a specific and adequate health budget. Let’s make our voice heard on this vital issue! Thank you to MEP Sokol for his commitment to fighting for health.
Dr Kristine Sørensen, Founder of the Global Health Literacy Academy, set the scene for the meeting. Dr Sørensen began by sharing her personal story and explaining how a brain injury impacted her life. Despite being highly educated and considering herself highly health literate, she found herself struggling to find the information, resources, and understanding she needed.
Dr Sørensen called for health-literate health systems and urges us to integrate health literacy into European brain health and neurological care strategies.
Dr Jana Midelfart-Hoff, MD/Professor in Neurology and Board Member of the European Academy of Neurology (EAN), began by asking, “How do we give people tools to live with neurological disease, but also to prevent neurological disease in society?”
She identified two main ingredients in becoming health literate: time and trust. She told the story of a patient of hers who had problems with walking. A neighbour, seeing him get out of his car, wrongly assumed he was drunk. He felt very stigmatised by this experience, which Jana said is an essential reminder that we need not only to improve health literacy among patients but also among the general society.
Dr Midelfart-Hoff said that we must help people to make good choices. She gave a good example of the ‘Nutri-score’ and asked, ‘What if we had a “Brain Health Index”?’
She would also like to see the EU develop a Brain Health Strategy.
Dr Claire Behan, Lecturer and Programme Director in Neurology Nursing, said that communication is embedded in nurses’ work, as they work at the patient’s bedside.She suggested that we need human-centred care, rather than only patient-centred care. Our systems need to be, and should be incentivised to be, health literate. We must teach the public to analyse information critically. We need to be clever about where we position this messaging within crowded curricula.
Dr Andra Ciucă, Chair of the European Board of Medical Genetics – Genetic Counsellors Branch, suggested “We don’t need more money in genetic counselling, we need better regulation.” Each country has its own rules, and the role is recognised differently across Europe. Regulation will improve safety for those accessing genetic services.
When asked about dealing with the often invisible issues of chronic pain, Nadia Malliou, President of Pain Alliance Europe, picked up on discussion points by MEPs and the healthcare professionals in the room, citing that good communication requires trust from both parties and that gender differences unfortunately have a negative impact on women. She reiterated that health literacy is not just for patients, but for everyone.
Elisabeth Kasilingam, Chief Executive Officer of the European MS Platform, believes that health literacy is about health equity. How can we make better health systems for everyone? We need a co-designed approach involving everyone. The role of patients is vital for understanding what is really important to them. Half of the respondents to EMSP’s study report that they do not have well-coordinated systems.
Data and evidence are essential, particularly in neurology, and, as Nadia pointed out, we need to ensure we investigate diverse datasets, including minority groups. Elisabeth said we need investment in data collection to enable better-informed decision-making and health literacy programmes.
MEP Ondřej Dostál (Independent, Czechia) worked for 20 years with patient groups, helping them to access care. He highlighted the importance of sharing data and said he is looking forward to the coming European Health Data Space.
He said the role of nurses in communities must be enhanced and acknowledged that many are as educated as doctors.
MEP Dostál noted that in some countries, reimbursement takes 2-3 years. This violates EU law, which requires it to be completed within 180 days.
MEP Tomáš Zdechovský (EPP, Czechia) said he has seen significant progress in the past 12 years.
He asked, “Why don’t we give more responsibility to nurses in our systems?” and suggested that doing so would reduce pressure. He suggested that rather than discussing problems, we must come armed with solutions.
MEP Zdechovský suggested we need to have provocative conversations with young people to raise awareness of brain health and neurological issues. This will help alleviate misinformation and disinformation.
He spoke about the importance of having patient advocacy groups represented in the Parliament, bringing MEPs face-to-face with the reality of our situations.
The problem of disinformation was also raised by MEP Vytenis Povilas Andriukaitis (S&D, Lithuania), who discussed how health literacy impacted outcomes during the COVID-19 pandemic. He wondered how many people died as a result of misinformation, and asked, “How do we build trust in science?”
MEP Andriukaitis is proud that we are now discussing “Brain Health” as well as “Mental Health.” He said we must create coalitions and work together for change. He shared the excellent phrase- “Act, align, accelerate!”
MEP Cynthia Ní Mhurchú (Ireland, Renew Europe) could not be with us in person, but shared a video message noting the prevalence of neurological conditions such as stroke, multiple sclerosis, epilepsy and migraine, which are leading causes of disability and service use. Yet despite their prevalence, awareness and understanding of these conditions is limited. Health literacy is the foundation for prevention, early diagnosis, treatment and compassionate care. We must begin this education at the school level, integrating basic neuroscience, genetics and health awareness so that young people grow to make informed health decisions.
In his video message to the Group, MEP Billy Kelleher (Ireland, Renew Europe) began by addressing the workforce shortage in the health sector. He explained that a comprehensive understanding and know-how of condition management are essential for quality of life, particularly in rare neurology, where a further layer of complexity exists. This cannot be achieved without the spectrum of health care professionals needed for rare neurological conditions, specifically the care and understanding provided to families by specialist neuro-nurses and genetic counsellors.
Building health literacy in Europe is about giving every citizen, from child to policymaker, the knowledge and tools to protect and understand their brain and neuro health!
In his written statement, MEP András Kulja (Hungary, EPP) emphasised the importance of brain health and brain capital as well as the need for neurological and mental health to have an “in all policies” approach. He highlighted health literacy being the bridge between science and people’s lives concluding: “Let us ensure that brain health and health literacy stand together at the heart of EU policy because a healthy brain is not only a medical issue, but the foundation of a democratic, cohesive, and humane society.”
Towards the end of the energetic meeting, Kristine Sorensen suggested a need for an own-initiative report on health literacy. She would like to see the EU become stronger in this area and develop reports/strategies.
Elisabeth Kasilingham reminded us that developments in AI are useful solutions, but we need to exert caution, particularly in relation to diversity of populations and noted that we need a strong coalition to work for change.
In her closing remarks, Astri Arnesen, President, European Federation of Neurological Associations (EFNA ), noted and thanked the firm support of the MEPs participating today.
Please find the presentation on this link.
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