On Thursday the 16th of October 2025, I had the opportunity to attend “Health Literacy in Action: Enhancing Patient Outcomes and Policy Impact,” a gathering that happened at the European Parliament, kindly hosted by MEP Tomislav Sokol (EPP, Croatia) and organized by EFNA (European Federation of Neurological Associations).
The meeting started with a keynote by MEP Tomislav Sokol, who highlighted a significant statistic: more than half of patients struggle to effectively communicate their symptoms to healthcare providers.
If patients cannot clearly articulate their symptoms or do not understand what the doctor tells them, this can lead to misdiagnosis, delayed treatment, or non-adherence.
Moreover, the paternalistic medicine culture, where the doctor is seen as the ultimate authority, often reduces patients’ willingness to ask questions or speak up.
We must move from a hierarchical care model to a literate, participatory one.
Moreover, the paternalistic medicine culture, where the doctor is seen as the ultimate authority, often reduces patients’ willingness to ask questions or speak up.
We must move from a hierarchical care model to a literate, participatory one.
Health literacy is part of the prevention scheme
Hon. Prof. Kristine Sorensen, Founder of the Global Health Literacy Academy, shared a personal health experience where a doctor failed to take her symptoms seriously for a long time before she was finally treated. She emphasized the distinction between health literacy and formal medical education, acknowledging that despite being a trained physician, she still felt adrift during her own experience.
Who is listening, at which moment, and how is the patient describing their symptoms, these are all part of an accurate diagnosis.
When Misunderstanding Breeds Stigma
Nadia Malliou remarked that when the public lacks understanding of various conditions, stigma can emerge - for example: multiple sclerosis symptoms can appear similar to drunkenness, Parkinson’s tremors can be mistaken for excessive caffeine consumption, or ADHD behaviors can be judged as a lack of discipline. This is why awareness and dialogue matter- because behind every misunderstood symptom is a person that must be met with empathy and compassion.
Beyond the Clinic: Empowering Communities in Health Education
Dr. Claire Behan highlighted how nurses have been translating medical symptoms for a long time and how important it is to have the skills to translate the information accurately and, even more than that, communicate it with empathy.
How we deliver information and the transition from patient- to human-focused care are such important aspects of health communication.
Health literacy shapes how we look at one another: whether we judge differences or respond with compassion. In this sense, to be health-literate is also to be human-literate - to see others with understanding rather than stigma.
Complex Conditions Require Adequate Understanding
Some health conditions can manifest through up to 40 different symptoms, making diagnosis and management challenging even for medical professionals. If experts struggle to fully grasp these complexities, imagine the confusion faced by families, employers, and schools trying to support someone living with them.
To strengthen capacity, we need to incentivize people and communities outside the traditional providers (nurses, caregivers, and families) to help patients understand their symptoms, possible pathways, and treatments.
Health literacy is increasingly becoming a marker of privilege.
Dr. Jana Midelfart-Hoffnoticed that those who are socially and physically active, well-connected, and health-conscious are more likely to access, understand, and use health information correctly.
Yet many others remain excluded, left behind by differences in education, digital access, and social networks.
True equity in health requires more than information availability; it demands that we design communication and support systems that meet people where they are.
Bridging this gap also means recognizing and respecting patients’ own vocabulary, the words they use to describe their bodies, experiences, and needs. Nobody should be left behind.
Elisabeth Kasilingam mentioned the importance of AI ethics and regulation in health literacy. As AI tools increasingly shape how people search for, interpret, and act on health information, understanding how these systems work becomes part of being health-literate.
Trust, Dialogue, and Collective Action in the Age of Misinformation
An important reflection from MEP Vytenis Povilas Andriukaitis:
In an era flooded with conspiracy theories, misinformation, and emotionally charged messages, societies have become divided into echo chambers where people fight for their version of truth.
Amid this noise, many turn to “Dr. Google” for answers, further blurring the line between expertise and opinion.
Rebuilding trust in science requires more than fact-checking - it calls for coalitions, shared spaces, and collective gatherings that bring communities, professionals, and institutions together.
Reimagining Health Systems for Shared Responsibility
MEP Ondřej Dostál highlighted that strengthening patient autonomy begins with transparency: in pricing, reimbursement, and the structures that govern care.
Yet true transformation also requires expanding responsibility beyond physicians. Nurses, caregivers, and community health workers are often closer to patients’ daily realities, and empowering them through supportive policies and literacy programs can help relieve overburdened doctors and make healthcare more responsive.
Healthcare policies must be paired with investments in caregiver and patient literacy, ensuring people understand their rights, options, and costs.
A Brain Health Index and similar population-level indicators could further guide equitable resource allocation and promote a culture of prevention and transparency across the health ecosystem.
Introducing basic brain health education in schools can lay the foundation for lifelong understanding of how emotions, cognition, and behavior are connected.
The Cost of Health Illiteracy and the Need for Critical Understanding
We are already paying the price for health illiteracy: in misinformed decisions, preventable illnesses, and growing mistrust in medical guidance.
Empowering people to critically analyze health information - to discern what is credible and what is harmful- is essential for both personal and public well-being.
With the rise of health influencers and AI-driven recommendations, I believe it’s crucial to design systems where we train people to be aware and able to recognize marketing disguised as health information, as well as double-check the AI-provided information they read with trusted scientific sources.
My personal experience with health literacy
On a personal level, looking back at the experiences I’ve had within the healthcare sector, I would like to make a few important mentions:
- I wish it were normalized - whether taught early in school, in my family, modeled in my community, or encouraged by my doctor themselves - to inquire, research, read, and educate myself when I receive a diagnosis or a proposed treatment. No one ever told me that it’s okay to ask questions: to ask about alternatives, about timelines for discontinuation, about side effects, about long-term impacts, about how it might affect my daily life, my appearance, my psyche, my relationships, my sleep, my concentration, my mood, my capacity to work or create, my fertility, my creativity, my sense of identity, or even what it might mean for the version of myself I’ll be living with months or years down the line.
- It’s okay to ask to take notes or even request written instructions.
- Unfortunately, the paternalistic model of medicine, and yes, the profit-driven, busy one, has left little room for dialogue or shared decision-making. We must create shame-free environments in the doctor’s office where questions from family members and caregivers are welcomed and not met with inconvenience, tension, or as a burden.
Health Literacy in Action: From Brain Health Prevention Campaigns to European Policy Making
Recent initiatives such as the EAN Brain Health Mission, the CAS in Brain Health program at the University of Bern, initiated through the Swiss Brain Health Plan, or the Brain Health Challenge initiative, illustrate how health literacy can be turned into tangible public action - helping people better understand, care for, and advocate for their brain health.
At the policy level, the EU Health Literacy Strategy and the emerging EU Brain Health Strategy demonstrate a growing recognition that knowledge and empowerment of communities are central in shaping healthier societies.
Because improving health literacy is not just about communication - it is also about access, culture, and collective intelligence.