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Pre-summit Deep Dive Session
Genomics, Patient Safety & Engagement
📍 sbark | spark, Cardiff University – 24 September 2025
An afternoon of focused exploration and dialogue at Cardiff University's innovation hub before the main Summit begins at voco St David's Hotel.
Led by João Breda, Iñaki Gutiérrez-Ibarluzea, Ian Green, Antonio Pardinas, Finn McCartney, Ceri Steele & Chris Carrigan
This interactive Deep Dive brought together international experts, patient advocates, and researchers to explore how genomics and patient engagement can work hand in hand to strengthen trust, safety, and impact in the secondary use of health data.
On one side, global and local leaders from WHO Europe, Cardiff University, SNOMED International, and the Basque Government examined how genomic insights and pharmacogenomics can improve patient safety and inform predictive models for real-world healthcare. On the other, patient representatives from EUPATI and use MY data shared case studies, ethical frameworks, and practical tools to ensure that patients' voices shaped the governance of data-intensive research.
Designed as a peer-learning experience, the session blended focused expert inputs with facilitated breakout discussions, culminating in the co-creation of a draft "Joint Charter on Trustworthy Secondary Use of Health Data." The aim was to inspire international collaboration and generate actionable recommendations for embedding trust, transparency, and equity in the use of health data.
🗓️ Agenda – Deep Dive Session
Wednesday 24 September 2025 | 14:00–17:00 (BST, UTC+1)
Venue: Digital Transformation Innovation Institute (DTII), Cardiff University
Designed as a peer-learning experience, the Deep Dive will blend focused expert inputs, real-world case studies, and facilitated discussions. Participants will have the opportunity to engage directly in breakout dialogues on genomics integration, patient safety, ethics, and engagement, working towards actionable frameworks that empower patients and inform the trustworthy use of health data.
14:00–14:15 | Opening Remarks
Angharad Watson (DTII, Cardiff University)
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João Breda (WHO Europe, virtual)
14:15–14:55 | Scene-Setting Inputs (8 min each)
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Antonio Pardinas – Genomics & Mental Health: UKRI's Mental Health Platform in Wales
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Iñaki Gutiérrez-Ibarluzea – Safety Frameworks & HTA
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Ian Green – Genomics & Clinical Engagement, SNOMED International
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Finn McCartney – Patient Education & Literacy (EUPATI)
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Ceri Steele & Chris Carrigan – Lessons from use MY data
14:55–15:35 | Breakout Discussions (3 Themes)
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Genomics Data Generation & Sharing (Antonio Pardinas)
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Building trust & involving patients in data studies (Finn McCartney)
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Transparency and patient expectations of data use (Ceri Steele & Chris Carrigan)
15:35–15:50 | Coffee Break
15:50–16:35 | Report Back & Co-Creation
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Each group presents key insights.
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Drafting a Joint Charter on the trustworthy use of health data for secondary purposes, which is defined as any use of data for purposes other than direct patient care, such as research, public health, and policy development.
16:35–17:00 | Closing Dialogue
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Chairs highlight synergies and propose actionable next steps.)
Thanks to DTII, Cardiff University
These Pre-Summit Deep Dive Sessions are made possible thanks to the generous support of the Digital Transformation Innovation Institute (DTII), Cardiff University.
