On 16 May 2025, the European Infrastructure for Translational Medicine (EATRIS), in collaboration with Rīga Stradiņš University, hosted an interactive online discussion titled “Let’s Discuss Patient Involvement in the Digital Era”. Organised under the EATRIS-CONNECT project, the event gathered over 40 stakeholders from across Europe, including researchers, clinicians, policy-makers, patient experts, and partners from industry.
The objective of the event was to explore how the role of patients is evolving within the digital era and research ecosystems, particularly in the context of the upcoming European Health Data Space (EHDS). Participants examined how digital tools, artificial intelligence, and evolving regulations are enabling patients to move from passive data donors to empowered co-creators and decision-makers in research and healthcare.
Opening the event, Eliis Keidong, Member Engagement Officer at EATRIS, emphasised the importance of inclusive and multi-stakeholder approaches to ensure that digital healthcare transformation remains truly patient-centric.
Keynote: Building Trust Through Governance and Engagement
Dr. Ildikó Vajda delivered the keynote presentation from the Dutch Patient Federation, titled “The Role of the Health Data Access Body in the New EHDS Regulation – The Netherlands Experience.” Dr. Vajda shared insights into how patients in the Netherlands are actively contributing to national health data governance strategies. She emphasised that trust is essential to a sustainable health data ecosystem. According to Dr. Vajda, trust can only be built if patients are well-informed, meaningfully involved, and given real control over how their data is used. She highlighted the Dutch approach of combining technical innovation with patient-centred ethics, and called for dynamic, layered consent mechanisms that reflect individuals’ changing preferences over time.
The second part of the event featured a roundtable discussion titled “Patient Role(s) in the Digital Era,” moderated by Baiba Ziemele, an experienced patient advocate and chair of the Latvian Network of Patient Organisations. The panel brought together three additional experts: Maria Dutarte, Executive Director of the European Patients’ Academy on Therapeutic Innovation (EUPATI); Begonya Nafria Escalera, Head of Patient Engagement in Research at Sant Joan de Déu Children’s Hospital in Barcelona; and Dr. Carlos Molina, Head of the Stroke Research Group at Vall d’Hebron Research Institute and lead of the EU-funded TRUSTroke project.
The panellists shared practical insights on co-creating with patients and integrating patients into clinical research and innovation processes. Maria Dutarte highlighted the growing need for digital health literacy and patient education, stressing that engagement must be grounded in clear, accessible language. She further introduced EUPATI’s new educational resources on digital health and the EHDS, which aim to prepare patients to navigate the complex digital system. Begonya Nafria Escalera emphasised the importance of involving young patients and caregivers, noting that adolescents and children are capable of expressing valuable perspectives about their health and data usage, and that schools should play a role in teaching digital and health literacy. Dr. Carlos Molina shared how his team uses co-creation with stroke patients to design inclusive, user-friendly digital tools and described their experience developing federated AI models that enhance data privacy and trust.
Key takeaways
Among the main takeaways of the discussion was the consensus that patient involvement must start early on, be meaningful and systemic, not symbolic. Panellists agreed that health data is a public good, but its use must be based on transparency, individual autonomy, and strong safeguards. However, they also stressed that although many novel opportunities are created, technology is not the end goal, but a tool that must be tailored to real human needs and contexts. Furthermore, to reduce the digital divide that can naturally occur, the solutions must be accessible to people with varying levels of digital and health literacy, and engagement must be designed with diversity and inclusion in mind. Nobody should be left out or behind.
Looking Ahead
The event reinforced that a patient-centred, inclusive approach is not just a desirable principle but a necessity for ethical, effective, and sustainable innovation in healthcare. Participants were invited to continue these critical conversations at the upcoming PMNET Forum in Riga this October, where EATRIS-CONNECT will further explore personalised medicine and patient engagement.
- Learn more about EATRIS-CONNECT Project here, which is advancing the digital transformation of translational medicine.
- See the event page here.
- Watch the recording below or here.
