Some of my thoughts https://andrabria.com ru Tue, 18 Nov 2025 11:13:22 +0300 Health literacy as a preventative measure https://andrabria.com/writings/bxk51j0401-health-literacy-as-a-preventative-measur https://andrabria.com/writings/bxk51j0401-health-literacy-as-a-preventative-measur?amp=true Tue, 18 Nov 2025 10:58:00 +0300 Julia Scott On Thursday the 16th of October 2025, I had the opportunity to attend “Health Literacy in Action: Enhancing Patient Outcomes and Policy Impact".

Health literacy as a preventative measure

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.

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.
]]> Reframing "dementia". Treatments will come, will the lexicon catch up? https://andrabria.com/writings/16d13higm1-reframing-dementia-treatments-will-come https://andrabria.com/writings/16d13higm1-reframing-dementia-treatments-will-come?amp=true Tue, 18 Nov 2025 10:58:00 +0300 Simon Einstein For many neurological patients, the words that describe their condition often carry years and years of stigma and misrepresentation.

Reframing "dementia". Treatments will come, will the lexicon catch up?

For many neurological patients, the words that describe their condition often carry years and years of stigma and misrepresentation.

Take for example, dementia. Can you imagine that the word survived from the late 16th century, from the Latin root demens, meaning “out of one’s mind.” ? It seems hard to comprehend this “legacy”, especially when we consider how language evolves over time.

It’s like we’re still riding around in horse-drawn carriages while simultaneously launching rockets into space, or to use a medical correlation - while simultaneously performing gene editing with CRISPR technology.

Dementia is a broad term used to describe a decline in cognitive functioning severe enough to interfere with daily life and activities. It encompasses symptoms such as memory loss, difficulty with problem-solving, impaired language skills, changes in behavior, and reduced reasoning abilities.
Dementia is not a single disease but rather a group of symptoms caused by various underlying conditions, the most common being Alzheimer’s disease (caused by plaques in the brain), followed by vascular dementia (caused most often by stroke) and Lewy body dementia (associated with abnormal protein levels).

As our understanding of neurological conditions evolves, so too should our language and approach.

The word “dementia” carries a heavy burden. It’s a term that has become synonymous with loss - loss of memory, identity, and independence.
To me, being close to someone with vascular damage, I can only say this is far from the truth.
Not to underestimate the tragical effects of this condition, which affect the patient, their caregivers, family and friends. But there’s a lot more going on, or how Emma Heming Willis likes to say: “the remarkable reframe”.
Making a reframe for this condition is helpful both for the patient and the care partner, but also for policy makers, physicians, advocates and the society at large.
Reframing “dementia” means something that science and medicine have left behind, although emotions are technically a part of our anatomic system.

The reframe is about the newly formed social connections, about the kindness and the emotional truth that the person with this conditions speaks of. It’s about adaptation and resilience, rather than solely a progressive decline.
It’s our collective need for companionship that the individualistic society in which we live has forgotten about, and which (ironically) gets us to this very damaging state (that is often accelerated by loneliness, lack of social support etc.)
On a practical note, reframing “dementia” is nothing else but bringing into the 21st century a lexicon that aligns better with the progress we have made in brain health.
The negative connotations often lead to delayed diagnoses and reluctance to seek treatment, as caregivers and patients fear the implications of such a label.
My loved one does not have dementia. - This is what many care partners think, because it’s too frightening to believe otherwise.
So we all need this, for the sake of our loved ones, for the sake of our society’s courage to hope, to advance, to unveil better treatments.
Not to mention that in some communities, especially remote or rural areas, the stigma is even more pronounced due to cultural beliefs about the causes of dementia, traditional views on aging and cognitive decline and more.
Reframing dementia is not just about finding a new word; it’s about changing the narrative surrounding the condition. By shifting our language and perspective, we can encourage earlier diagnosis and treatments and stimulate more robust research and funding initiatives.

Some practical steps forward:

  1. Encourage the use of person-centered (instead of disease-centered) language: in healthcare settings, media, and the public discourse. For example, say “person living with dementia” instead of “dementia patient”.
  2. The term “dementia” has been used since antiquity and remains deeply ingrained in medical literature. With the development of more precise diagnostic tools, language must shift to reflect specific biological markers or subtypes of cognitive disorders.
  3. Move away altogether from “dementia” as a blanket term: push to recognize the heterogeneity of cognitive disorders and use more specific language.
  4. A few examples: “ Neurocognitive disorder”, “Cognitive variability”, “Brain health challenge”, “Memory and thinking changes”.
  5. Focus on capabilities: shift from deficit-based language to highlighting remaining abilities and potential for meaningful engagement.

Words have power. Let’s use that power to create positive change.

Whether through petitions, social media campaigns, or grassroots community efforts, each of us has a role to play in changing the narrative. By doing so, we can help ensure that fear and stigma no longer stand in the way of diagnosis, treatment, and support for those living with cognitive challenges.
]]> Decoding behavioral change in prevention https://andrabria.com/writings/z0dy18li21-decoding-behavioral-change-in-prevention https://andrabria.com/writings/z0dy18li21-decoding-behavioral-change-in-prevention?amp=true Tue, 18 Nov 2025 10:58:00 +0300 Gregory Willson I’ve recently heard something like “most medical advice is obvious,” and it got me thinking.

Decoding behavioral change in prevention

I’ve recently heard something like “most medical advice is obvious,” and it got me thinking. Yes, if you think about it, most recommendations for prevention are quite straightforward.

We intuitively realize we must eat nourishing food, move our bodies, and get good sleep.
But what really happens on the road between those obvious interventions and actual behavior change?

“Sleep medicine is behavioral,” Dr. rer. nat. Albrecht Vorster told us during a recent visit at the Sleep Clinic in Bern, “…but so is most medicine.”

I've been thinking about this for a while today.

A few thoughts came to my mind:

. Environment, resources, and unique context

When talking about behavioral change in prevention, the interventions really need to match the person’s schedule, lifestyle, geography, and unique environment and context.
For example, if you are a person who lives in a small city where you don’t have access to a gym, it will be more difficult for you to do weight training vs. someone who lives near an Equinox, for example.
Or if you're a new parent or caregiver requiring constant daytime alertness, maintaining a regular workout schedule becomes significantly more difficult.
Or if you simply don’t have proper infrastructure (e.g., you live near a train station) to help you maintain a weekly running practice, you simply won’t do it.

2. Individual resources and personal capacity

Another thing, closely related to the first one, refers to the individual capacity, preference, and already ingrained behavior of a person.
Some people might prioritize cooking and eating at home due to their genuine love for it, while treating sleep as non-essential.
Others might choose to eat out or order office meals, using the time they save on fitness training after work.

3. Behavior change is an individual pattern adjustment

For example, I used to have a gym subscription and also enjoyed running at least once a week, but during a particularly difficult context in my life, I left these habits behind. I was so tired and preoccupied that I could not find the slightest time for movement. At the same time, I didn’t really have decision-making energy, because I was mostly running on autopilot.
Something else to consider is that if your work life is draining you, finding the willpower to hit the gym afterwards would require a huge amount of energy. So maybe you could try changing your workout approach—maybe home-based yoga would work better for you. Also, recognizing that willpower is finite - if your work is draining, evening habits need to be nearly effortless.
Another example might be someone who struggles with sleep—if they invested in a new mattress to replace an uncomfortable one or transformed their bedroom into a more inviting space, would they begin to view sleep as a worthwhile indulgence?

Or do you think a person who has awakened at 5:00 am every day of their life easily adjusts to sleeping until 11:00 am? (see our parents or grandparents.)
Which brings me to the next topic, which is generational patterns.

4. Generational patterns

We live in a time deeply marked by the digital environment, which has disrupted our circadian rhythms and our sleep patterns.
Our parents and grandparents could just fall asleep, while we are scrolling TikTok at 1:00 am and living on pure caffeine and anxiety.
“We used to gather at the dinner table and have these meal rituals with our elders,” remarked Dr.Vorster during our visit, and I do have warm memories of cozy lunches and dinners with my grandparents, yet I'm struck by how different things are now—we hardly find time to eat properly, always rushing from one emergency to the next deadline or meeting.

5. Identity-based motivation

I recently read somewhere the observation that "phone screens are for our generation what TV was for our parents," and while it rang true, it left me deeply unsettled. This discomfort made sense when I discovered the psychological principle behind it: we experience internal tension when our behaviors contradict our self-image.
Research shows that behavioral changes happen when we anchor them to identity rather than outcomes. The most effective approach isn't setting goals like "I want to stop scrolling," but rather adopting identity statements: "I'm someone who prioritizes my mental clarity" or "I'm not the type of person who mindlessly consumes content."
This identity-based approach works because it leverages our fundamental need for psychological consistency. When we see ourselves as someone who values sleep, staying up scrolling creates cognitive dissonance that naturally motivates change. Instead of relying on willpower to achieve external goals, we're simply acting in alignment with who we believe ourselves to be.
The shift from goal-oriented thinking ("I should spend less time on my phone") to identity-based thinking ("I'm someone who is intentional with my attention") transforms the behavior from something we're forcing ourselves to do into something that feels self-respectful.

6. Accountability Through Love

Another thing that is really powerful in behavioral change is the science of social motivation, particularly accountability through friendship and love. It creates natural built-in rewards (connection, pride, shared joy).
This is why Duolingo shows your friends’ progress, nudging you to catch up, or Nike wants you to run in pair with a friend. You're not just learning Spanish, you're maintaining your reputation as "someone who follows through." And running with a friend transforms exercise from a willpower-dependent activity to a social commitment. Peer accountability shifts the cost from "I'm disappointing myself" (easy to rationalize) to "I'm disappointing someone who matters to me" (much harder to ignore).
There’s also the science of mirror neurons and behavioral contagion, where we unconsciously mimic people we're close to. When someone you love models good habits, your brain naturally wants to sync up with them.
Something else that I noticed in the apps I use and that seemed powerful was Aavia’s Partner Sharing feature. With this, Aavia texts your partner, bestie, or loved one with tips to support you during your difficult cycle phases. (feature available only in the US for now).
Having someone witness your efforts/struggle makes the struggle feel less isolating, and their encouragement literally regulates your stress response.

7. Aspirational community belonging

If your friend group does Sunday meal prep together, it becomes social and fun rather than a chore; but if everyone in your circle orders DoorDash, home cooking feels off.
I've seen a lot of my friends, increasingly being part of wellness clubs. Running clubs in San Francisco, running clubs in Barcelona, communal sauna clubs in Paris.
This is the actually the intersection of wellness trends, social belonging, and what I'd call "aspirational community building.”
As traditional community spaces (churches, neighborhood bars, local clubs) decline, wellness activities fill that social void.
They provide structured ways to meet people with shared values in increasingly atomized cities. Unlike gyms where people stay isolated, these are explicitly communal.
Seeing friends posting from running clubs or sauna sessions creates social proof that this is "what people like me do". Plus, it taps into the fear of missing out on both the health benefits and the social connections. And the Instagram-ability of these activities make them self-reinforcing.
This works for behavior change because you're not actually forcing yourself to exercise, you're hanging out with friends. It creates social accountability without feeling like pressure, and it makes the activity about identity and belonging, not just health outcomes.
Wellness becomes the vehicle for what people really want: community, identity, and social connection.

8. How behavior is shaped by cultural norms and cultural phenomena

If we were to look at the historical context - for example in the 70’s and 80’s - smoking rates were around 40-45% of US adults (vs ~12% today). Smoking was associated with coolness, rebellion, success - think about the Mad Men series with all those executives smoking in meetings.
Then aerobics classes and gym culture explosion in the 80’s and 90’s - fitness became aspirational middle-class identity. Then the tanning culture- it signaled wealth and leisure time (now it signals skin damage risk). Then the diet cycles.
Now trending among high performers (longevity enthusiasts, tech CEOs) is sleep optimization. Or the meditation practice - which went from hippie practice to corporate wellness tool.

9. Individual "motivation" is largely cultural programming

Which leads me to conclude this: we think we're making personal choices, but we're mostly conforming to or rebelling against our tribal norms.
The hustle culture sleep problem - "Sleep when you're dead" mentality peaked with tech/startup culture. But now, a new era of longevity start-ups reframed sleep as performance optimization. Elite athletes and CEOs talking about their sleep protocols let people maintain their achievement-oriented identity, while actually taking care of themselves.
I think it’s absurd to justify one of our basic human needs - sleep - as “performance optimization” and this only plays onto our capitalistic ethos. In a productivity obsessed culture, pure rest feels selfish, a rebelious act. But apparently, in this culture, without reframing it as "performance optimization," it gets deprioritized.
The irony is that the same generation that created the problem (24/7 digital hustle) is now creating the solution by making good sleep trendy. Sleep tracking apps, fancy sleep tech, "sleep hygiene" becoming as discussed as workout routines.
(…)
In the end, what matters is not just what fits you, or what fits the culture you are a part of. It matters to recognize that health (and prevention) is not just individual; or purely reliant on you and YOUR behaviour.
It is deeply connected with societal trends, norms, structures. And yes, it’s also political.

10. It’s also important to remember that health is fundamentally structural and political, not just personal.

The most successful health interventions work on changing the environment and systems, not just individual willpower.
Prevention isn't solely an individual responsibility - it's deeply embedded in our environmental and social systems.
We must recognize that when we frame health outcomes as purely individual choices, we ignore the powerful role of structural factors: urban design that discourages walking, work cultures that normalize sleep deprivation, food systems that make processed options more accessible than fresh ingredients, or technology designed to be addictive.
This individual-focused approach doesn't just fail - it's harmful. It places the burden of overcoming systemically created problems entirely on the person, leading to shame and self-blame when they struggle against forces much larger than themselves.
Someone trying to eat healthily in a food desert, maintain work-life boundaries in a hustle-culture workplace, or get quality sleep while juggling multiple jobs isn't experiencing a willpower deficit - they're navigating structural challenges.
True prevention requires acknowledging that personal agency operates within constraints. The most successful interventions work by changing the environment to make healthy choices easier, more accessible, and socially supported, rather than asking individuals to heroically resist systems designed to undermine their wellbeing.
This systems thinking shifts the conversation from "Why can't you just do better?" to "How can we create conditions where better choices become natural choices?"

True healthcare prevention functions only in alignment with environmental justice, agricultural reform, transportation infrastructure, technology regulation, and, of course, economic reform.

Healthcare prevention is fundamentally a policy issue, as well as a privilege.
Living wages that allow people time and resources for health-promoting behaviors. Housing policies that ensure stable, safe living conditions (housing instability directly impacts health outcomes).
Clean water and air as guaranteed public goods, not market commodities.
Stricter regulation of endocrine disruptors and neurotoxins.
Work regulations that limit excessive hours and mandate paid sick leave.
Policies that reduce car dependency and the associated sedentary lifestyle.

Why Public Health Avoids This:

It’s certainly easier to fund education campaigns than to confront powerful industries and economic interests, such as those in the food and chemical sectors, that might be disrupted by these changes.
Still, acknowledging that health is shaped by the conditions in which people are born, grow, live, work, and age—rather than by isolated individual choices—is the first step toward driving meaningful change.
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