The public session of the EATRIS-CONNECT Annual General Meeting, hosted online by Rīga Stradiņš University (RSU) on 17 June 2026, brought together 85 participants from the EATRIS-CONNECT consortium and the wider translational research community to discuss the evolving role of patients in the digital era of healthcare and research.
Following two days of internal consortium updates and planning, this final AGM session titled “Translational Research and Patient Engagement in the Digital Era” examined how we can work with patients as active partners and co-creators in shaping research priorities, study design and data use to advance digital health innovation.
The programme opened with welcome remarks from Florence Bietrix (EATRIS Deputy Director) and Marta Augucēviča (Rīga Stradiņš University), who highlighted the importance of ensuring that advances in artificial intelligence (AI) and digital technologies remain grounded in patient needs and societal benefit.
In the opening keynote, Emīls Sjundjukovs (Longenesis) explored how AI could transform translational research over the next decade, discussing topics including patient and citizen engagement, digital twins, personalised medicine, AI-driven drug discovery and the future of clinical trials. Mohammadreza Azimi (RSU) then examined the growing role of AI in biomarker discovery, imaging, diagnostics and the wider translational research pipeline, highlighting that the patient must remain at the centre of the journey from scientific discovery to societal benefit.
The second half of the session focused on an exchange of examples in patient engagement. Richard Buck, pancreatic cancer patient activist, shared perspectives on moving from patient participation to genuine co-creation in research. His remarks challenged participants to reconsider how value is assessed in clinical research:
“Forty years, billions of euros and tens of thousands of research papers for a few extra weeks of life expectancy in pancreatic cancer. To me, that is not progress worthy of the investment. Make the outcomes of the patients the only currency that matters, not publications.”
The following talks featured Rick Thompson (CEO of Beacon for Rare Diseases), Zoe Alahouzou (Senior Research Manager at EURORDIS), Marita Sandnes Gunn ( Board Member at GRIN Europe Association) and Prof. Martin Kolísek (researcher at BioMed Martin in Slovakia), who shared experiences from patient engagement and rare disease research initiatives across Europe.
Rick Thompson and Zoe Alahouzou highlighted how communities such as Beacon for Rare Diseases, EURORDIS and the REMEDi4ALL platform are helping to strengthen patient involvement in drug development and repurposing, ensuring that patient perspectives help shape priorities, decision-making and innovation.
Marita Sandnes Gunn shared insights from her advocacy work within the rare epilepsy community and the GRIN Europe Association, emphasising the importance of trust, collaboration and empowering patients and families as partners in research. Prof. Martin Kolísek presented examples from neurodegenerative disease research at BioMed Martin, demonstrating how patient engagement, patient-generated data and close collaboration between researchers, clinicians and patient communities can support advances in diagnosis, understanding of disease mechanisms, better patient outcomes and the development of comprehensive and personalised future therapies.
Discussion throughout the session reinforced a central message: meaningful patient engagement is essential to ensuring that digital innovation in translational medicine delivers improved outcomes to patients and society.
EATRIS-CONNECT project team would like to extend a heartfelt thank you to all speakers and participants for contributing with their time, expertise and personal and professional experiences. Only through building bridges between the community members can we truly advance in the mission of better health outcomes.
Learn more about EATRIS-CONNECT here.
