Earlier this year, FutureNeuro contributed to a national conversation about the future of health data sharing in Ireland at a cross-sectoral conference hosted at RCSI University of Medicine and Health Sciences.  

“Enabling Access to the Use, Re-Use and Sharing of Health Data for Research in Ireland”, held on 28 March 2025, brought together stakeholders from across research, healthcare, policy, law, ethics, and patient advocacy to explore how Ireland can build a trustworthy and inclusive data-sharing ecosystem. The event was co-led by our Deputy Director, Professor Gianpiero Cavalleri, alongside Professor Aisling McMahon (Maynooth University), Dr Ciara Staunton, and Dr Laura Whelan (RCSI). 

For FutureNeuro, whose work is grounded in translational neuroscience and personalised medicine, the responsible use of clinical and genomic data is critical. Many of the Centre’s research programmes—spanning the epilepsies, Parkinson’s disease, motor neurone disease, multiple sclerosis, traumatic brain injury, neurodevelopmental conditions and psychosis—depend on the ability to securely and ethically analyse patient data to uncover new insights and improve care. 

The conference explored how Ireland can respond to upcoming developments like the European Health Data Space (EHDS), a major EU initiative to streamline health data use across member states, while ensuring that any data strategy is underpinned by transparency, accountability, and meaningful patient and public involvement.  

A Shared Space for Discussion  

Three sessions guided the day’s conversations: 

• Session 1, chaired by Dr Derick Mitchell (The Synergist), focused on the current genetic and health data landscape in Ireland, with contributions from Prof Rachel Crowley (UCD), Dr Emer Doyle (Department of Health), Nuala Ryan (PPI contributor), and Dr Emily Vereker (National Research Ethics Committee). 

• Session 2, chaired by Dr Georgina Flood (Mater Hospital), focused on international best practices in ethical data sharing, featuring speakers from Genomics England, University of Modena, EURAC, and Uppsala University. 

• Session 3, a roundtable chaired by Professor Edward Dove (Maynooth University), brought together a diverse panel of stakeholders—including Dr Amy Holtby (Public and Patient Involvement), Professor Orla Hardiman (TCD/FutureNeuro), Dr David Murphy (Data Protection Commission), Dr Ana Terrés (HSE), and Dr John O’Neill (Department of Health)—to explore how to create a trustworthy data sharing eco-system in Ireland for impactful research.  

Across all discussions, there was broad agreement on the need for greater clarity around governance structures, more transparent communication with the public, and sustained investment in infrastructure that can support ethical data access. 

Relevance for FutureNeuro 

FutureNeuro’s participation in the event reflects our ongoing commitment to ensuring that health data sharing—especially in neuroscience—is guided by principles of trust, equity, and collaboration. 

The Centre’s research in genomics, digital health, and patient-centred neuroscience highlights just how valuable high-quality, well-governed health data can be. Just as importantly, it reinforces the need to co-develop data strategies with patients, clinicians and communities who are most directly affected. 

A follow-up policy report is now under development and will be published in the coming months.