On 23 May, EFNA’S Executive Director, Dr. Orla Galvin had the privilege of speaking and participating as a panellist at the Milan Longevity Summit as part of the session “Longevity by Design: Building Community-Based Brain Capital.”

Firstly, we would like to extend sincere thanks to Paweł Świeboda (NeuroCentury; Brain Capital Alliance) and Paola Zaratin (AISM/FISM – Italian Multiple Sclerosis Society) for their leadership in convening and moderating such a timely and important discussion. Their work in advancing the Brain Capital agenda is helping to strengthen the connection between brain health, societal wellbeing, economic resilience and healthy longevity.

The session opened with an important contribution from Abdelfatah Ibrahim, Chair of the OneNeurology Initiative and representative of the Multiple Sclerosis International Federation, who highlighted key findings from the WHO Global Status Report on Neurological Disorders and the urgent need to strengthen neurological care systems globally. Contributions from Bryan Strange, Ira Haraldsen, Kristin Schneeman, Caroline Montojo, Marco Mohwinckel and Sylvain Piquet further reinforced the importance of building sustainable, community-driven approaches to brain health and longevity.

What stood out most to Orla throughout the morning was something rarely experienced at a multi-stakeholder event. Regardless of whether speakers came from research, policy, investment, innovation, healthcare delivery or advocacy backgrounds, there was remarkable consistency in recognising the importance of meaningful patient involvement. Time and again, speakers highlighted that patients and communities must be actively involved in shaping research priorities, policy frameworks, healthcare delivery models, investment strategies and innovation pathways.

For those of us working in patient advocacy, this was both encouraging and refreshing. Too often, patient involvement remains consultative rather than influential. Patients are asked for feedback but are rarely given authority. They are invited to review decisions rather than co-design them. Yet the discussions in Milan reflected growing recognition that sustainable progress in brain health and longevity will only be achieved when people with lived experience are recognised as equal partners throughout the process.

During Orla’s presentation, “From Tokenism to Co-Design: Neurology Patients as System Shapers,” she highlighted some of the barriers that continue to limit meaningful patient influence across neurology and brain health. These include late-stage consultation processes, limited voting rights within decision-making structures, inadequate capture of patient-relevant outcomes, fragmented real-world evidence generation, inequitable participation opportunities and insufficient integration of patient-generated data into healthcare decision-making.

Importantly, she also emphasised that patient involvement should not be viewed solely as an ethical principle. It is a practical mechanism for improving outcomes. In neurology, delays in diagnosis, fragmented care pathways, poorly coordinated services and inadequate outcome measures can have lifelong consequences. Patients bring expertise that helps healthcare systems better understand what truly matters in daily life, including cognition, communication, fatigue, dexterity, independence, participation in education and employment, caregiver burden and quality of life.

The concept of Brain Capital provided an especially powerful framework for these discussions. Healthy brains are not only essential for individual wellbeing; they are fundamental to workforce participation, innovation, economic productivity and societal resilience. Investing in brain health therefore represents both a health policy priority and an economic strategy.

Orla highlighted the importance of future-proofing neurological and brain health systems through the responsible integration of artificial intelligence, machine learning, biotechnology and precision medicine. Advances in these areas have the potential to transform diagnosis, treatment pathways, disease management and research. However, innovation alone is not enough. Healthcare systems, policy frameworks and implementation strategies must evolve alongside technological progress if patients are to benefit equitably from these developments.

At EFNA, we have long recognised that meaningful patient involvement must extend across the entire neurological ecosystem. Through engagement with the European Medicines Agency (EMA), the World Health Organization (WHO), the European Commission, the European Parliament, the European Partnership on Brain Health, the Health Technology Assessment Stakeholder Network, clinical societies including the European Academy of Neurology (EAN) and the European Paediatric Neurology Society (EPNS), as well as partners such as the European Brain Council (EBC), EFNA works to ensure that neurological patients are not passive recipients of healthcare but active contributors to shaping policy, research, innovation and care delivery.

The Milan Longevity Summit demonstrated that momentum is growing around a more inclusive vision of brain health, longevity and healthcare transformation. The challenge now is to ensure that this momentum translates into practical change. If Europe is serious about strengthening Brain Capital, promoting healthy longevity and improving neurological outcomes, patient influence must move beyond consultation and become embedded within decision-making itself.

Only by moving from tokenism to true co-design will we unlock the full potential of brain health as a driver of healthier lives, stronger economies and more resilient societies.