by Admin | Jan 13, 2026 | Citizen Science and Public Engagement, Hereditary
HEREDITARY‘s ‘World Café Outcome: Priorities and Gaps’ report was released. The report captures key insights from a dynamic held on October 16, 2025, during EBC‘s . Diverse stakeholders, including researchers, healthcare professionals, innovators, individuals with lived experience, and patient organisation representatives, collaborated to identify solutions to challenges in multimodal health data integration, explainability of AI-based risk prediction models, and metadata alignment in a federated environment. Highlights include strategies for data standardisation, inclusive data collection, cross-sectoral collaboration, ethical AI tools, and balancing EU regulation processes to advance health research and inform brain health policy decisions.
Project representatives of the Harnessing Health Data Cluster had a chance to exchange views on the topics via interactive discussions, and three key insights were identified at the end of the meeting:
- Greater standardisation is needed at every stage of the data lifecycle (from data collection and analysis to sharing), along with clearer documentation of data sources.
- Providing education and training for healthcare professionals on required data elements can support standardisation and collection of high-quality, usable data.
- Empowering patients in data sharing consent processes and building awareness of underrepresented populations fosters patient inclusion in research.
Read the full outcomes of the HEREDITARY World Café in the REPORT.
by Admin | Oct 20, 2025 | Citizen Science and Public Engagement, Events, Hereditary
Last week, the HEREDITARY Project took part in two major European health innovation events: the X RIES Forum in Galicia, Spain, and the 5th Brain Innovation Days in Brussels, Belgium, both held on 15–16 October 2025. The project presence reaffirmed its commitment to collaboration and ethical data use across Europe.
The RIES Forum is a leading platform that brings together leaders from across the healthcare value chain to address international challenges in the health ecosystem. Organised by the Cluster Saúde de Galicia (CSG), the forum focuses on digitalisation, sustainability, and internationalisation of healthcare and promotes debate, innovation, and international cooperation.
The Brain Innovation Days, organised by the European Brain Council (EBC), are an international forum that gathers researchers, clinicians, policymakers, and industry stakeholders to discuss advances in brain research, neuroscience, and healthcare innovation. The 2025 edition focused on “The Adaptive Brain in a Fast-Evolving World”, exploring how science, technology, and society interact to support brain health.
RIES Forum 2025: International Challenges of the Health Ecosystem
During RIES2025, the HEREDITARY project took part in the roundtable “Health 2030: Advancing Towards Precision Medicine,” a dynamic session that brought together leading voices from healthcare innovation, data science, and genomics. Moderated by Anna Forment, Director of Digital Health and Head of Precision Medicine at NTT DATA Europe, the discussion explored how data-driven technologies are reshaping the future of healthcare.
The panel featured María Brión Martínez (Xenoma Galicia Project Coordinator), Abeer Fadda (Bioinformatics Lead at the European Genome-phenome Archive and researcher in the HEREDITARY project), Román López Seoane (PM4GOV, Ministry of Health’s Genomic Node SIGenES), and Prabs Arumugam (Clinical Innovation Lead, AWS UK Public Sector Healthcare). Together, they shared insights into how precision medicine is evolving through the smart and ethical use of genomic and clinical data.
A central theme of the conversation was the crucial role of data in building the future of precision medicine. Health systems generate vast and diverse datasets, but the real challenge lies in making them interoperable and secure, ensuring both privacy and accesibility. The panel also emphasized the need for multidisciplinary professional profiles that combine biomedical and genomic knowledge with data science and digital skills. Speakers underlined the huge opportunity to advance data sharing across hospitals, regions, and countries through federated data models, as HEREDITARY aims to do in the Federated Networking Infrastructure.
Finally, some areas in which precision medicina is doing great advances were highlighted, such as oncology and the study of rare diseases. The discussion perfectly reflected the collaborative and forward-looking spirit driving initiatives like RIES2025 and the European research landscape.
In addition, HEREDITARY engaged visitors at its exhibition stand, managed by FEUGA, the project’s communication leader, showcasing the project’s activities, vision, and expected impact, and providing a platform for dialogue with attendees from diverse fields of the health ecosystem.
HEREDITARY World Café at Brain Innovation Days
HEREDITARY hosted a World Café session at the Brain Innovation Days on 16 October, designed as an interactive format where participants rotated across tables to discuss key topics such as data privacy, multimodal health data integration, and AI-powered solutions. The session brought together a diverse group of patients, innovators, healthcare professionals, policymakers, and researchers, fostering open dialogue on how data-driven innovation can better serve people and improve brain and health outcomes.
Discussions underscored the importance of integrating diverse health data, to enable more personalised and human-centred care. Participants also emphasised the need for equitable representation in research, ensuring that data and clinical studies reflect the diversity of European populations.
Another key theme was co-creation and collaboration, recognising that innovation in healthcare requires all voices at the table, including patients whose lived experience can shape more relevant and impactful solutions. Conversations also explored the design of ethical and trustworthy AI, built with patients to ensure transparency, fairness, and clinical value, as well as the delicate balance between privacy and scientific progress.
At the end of the day, a HEREDITARY representative reported key insights from the session on the main stage, highlighting the value of collaborative dialogue in advancing brain and health research.
With its participation in both the RIES Forum and Brain Innovation Days, the HEREDITARY Project continues to expand its European reach, reinforcing networks and partnerships while promoting responsible and innovative approaches to genomic and health data.
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