Living longer—but losing ourselves

Each year, World Brain Day invites us to reflect on the extraordinary complexity of the human brain—and the equally complex task of protecting it. Medicine has made extraordinary strides in recent decades. We have seen extraordinary achievements and even cures in several cancers, we know exactly how to prevent fatal cardiovascular events, we have even advanced in regulating diabetes with implanted microchips, however we still haven’t figured out how to protect our brain.   

Not long ago, we used to ask what our elders had died of. Today, when we talk about older people, we ask whether they’re still mentally present. Life expectancy keeps rising, because we’ve learned how to cure diseases. And yet, care homes around the world are filled with people who are living longer— but with steeply declining cognition.

The diagnosis dap in brain health

This is the human face of neurological disease. And yet, our systems for developing and evaluating innovation still struggle to capture what truly matters to those affected. Too often, success is defined through narrow clinical endpoints that overlook the symptoms patients find most disruptive—fatigue, cognitive fog, anxiety, emotional withdrawal. These may be difficult to quantify, but they define daily experience [1].

One of the greatest challenges in brain health today is diagnosis. We speak of terms like Alzheimer’s, dementia, or stroke—but these are broad clinical labels, not precise definitions. In oncology, we biopsy, sequence, subtype, and personalize. In neurology, we still ask: Why did Grandma stop speaking, even though she seemed to understand? If it wasn’t a stroke, then what was it? We don’t know—and that’s the problem [2].

We must know more. Because only by truly understanding what happens in the aging brain can we treat it specifically, effectively—and ultimately, restore dignity and quality of life to millions of people living with cognitive decline.

Real-world implementation: More than a buzzword

This is what we now call real-world implementation—a term increasingly used, but urgently in need of substance. Our society is not equipped to carry the growing weight of millions who are living longer but unable to live independently. They are alive—but not living to the fullest.

That is why patient experience must take a central role in how we innovate. In neurology, progress rarely arrives as a single breakthrough. Instead, it unfolds in a series of meaningful advances: treatments that are better tolerated, easier to adhere to, or more compatible with a person’s life. The real test of progress is not just whether we can measure a biomarker, but whether we can restore autonomy, connection, and dignity.

Patient Experience Data (PED) offers a way to close the gap between innovation and meaningful care. It captures what remains invisible in imaging scans or lab tests—how a person feels, functions, and adapts. In conditions like multiple sclerosis, where symptoms evolve gradually and unpredictably, PED brings clarity to what clinical endpoints may miss [3]. It reflects the lived experience of disease—its impact on energy, cognition, mobility, and emotional wellbeing—and allows that experience to shape how we define therapeutic benefit.

Europe’s opportunity to lead

The case for integrating these measures has never been stronger. Across Europe, health policy is undergoing a pivotal transformation. The Pharmaceutical Package, the forthcoming Biotech Act, and the implementation of both the EU HTA Regulation and the European Health Data Space are together shaping a new architecture for EU life sciences, one that aspires to be more agile, equitable, and patient-directed.

These are welcome developments. But turning ambition into practice remains a challenge. Serious barriers persist: fragmented methodologies, uneven regulatory acceptance, and a lack of infrastructure to collect and apply PED at scale.

To address these challenges, Merck KGaA, Darmstadt, Germany, has launched a dedicated four-part series of policy roundtables in 2025. These events aim to reposition brain health as both a medical and economic priority—and to ensure that patient experience sits at the heart of that transformation.

Our first roundtable held earlier this month in Brussels, with cooperation of the European Policy Center (EPC) brought together European regulators, scientists, patient advocates, and policymakers to explore how real-world evidence and PED can be more effectively integrated into regulatory and clinical frameworks.

What emerged was a strong consensus: the future of brain health innovation must be patient-defined.

That means enabling PED to inform clinical trial design, regulatory evaluation, and access decisions from the outset. It means giving healthcare professionals the time and tools to capture these data in everyday practice. And it means investing in cross-border infrastructure to ensure that these insights are validated, shared, and used meaningfully across the EU.

Science that reflects what matters

The vision of protecting cognitive function and Brain Health is also mirrored in the work of Prof. Magdalena Götz, who was recently recognized with the 2025 Future Insight Prize by Merck. Representing the Helmholtz Center Munich, Prof. Götz has reshaped the understanding of regenerative neurobiology by discovering how glial cells—once seen as support structures—can be reprogrammed into functional neurons [5].

Her research opens new therapeutic possibilities for restoring cognitive function in patients suffering from devastating neurological conditions and brings us closer to transformative treatments for conditions such as Alzheimer’s and Parkinson’s.

World Brain Day is a moment to reflect, but also a call to act. At a time when Europe is shaping its next Multiannual Financial Framework [6], we have a pivotal opportunity to ensure brain health receives the attention—and the investment—it deserves.

This is especially true for chronic neurological conditions, where the economic, social, and human costs are immense, and the potential benefits from smarter, more empathetic innovation are transformative.

The path forward for brain health should allow for innovation that is patient-directed. That begins with redefining what we measure, what we value, and ultimately, what we reward.

On this World Brain Day, Merck reaffirms its commitment to brain health—and calls on partners across sectors to help make it real.

References

1. European Brain Council (EBC) White Paper on Value of Treatment, 2022, Value of Treatment - Policy White Paper – European Brain Council (EBC)
2. EMA Regulatory Science Strategy to 2025, Regulatory science strategy | European Medicines Agency (EMA)
3. Update on EMA Progress on Patient Experienced Data, 2024, https://www.ema.europa.eu/en/documents/presentation/presentation-update-ema-progress-patient-experience-data-j-garcia-burgos-r-gonzalez-quevedo-ema_en.pdf
   
4. Helmholtz Zentrum München – Press Release on Future Insight Prize 2025, Final_Press_Release_Templates_EN_Green
5. Multiannual Financial Framework, EUROPE DIRECT - Shaping the future: the Commission sets out the road to the next EU long-term budget… and wants citizens to have a say!