Draft Strategy Document

Co-Creating a Joint Charter on the Trustworthy Use of Health Data for Secondary Purposes

1. Purpose of the Charter

The Health Data Forum Global Hybrid Summit 2025 will co-create a Joint Charter on the Trustworthy Use of Health Data for Secondary Purposes. Secondary purposes are defined as uses beyond direct patient care, including research, public health, and policy development.

Trust is the foundation of all secondary data use. Without it, progress in research and innovation cannot be sustained. The Charter will:

• Articulate shared principles, safeguards, and commitments for trustworthy data use.

• Reflect the Data First, AI Later ethos: prioritising data integrity, transparency, equity, and ethical governance.

• Serve as a living document, to be enriched during the Summit and in future gatherings (e.g., Dubai 2025, Glasgow 2026, Bilbao 2026).

2. How the Summit Will Build the Charter

The Charter will emerge in the Deep Dive reflections session and will follow through the World Café process linked to lightning talk sessions:

• World Cafés: Each lightning talk session flows into a short roundtable dialogue. Speakers act as table hosts, guiding discussions with seed questions.

• Charter Capture: Every table is asked to identify at least one principle, safeguard, or commitment to add to the Charter.

• Rapporteurs: A facilitation team gathers these contributions, consolidating them into a visible draft (shared live or at daily wrap-ups).

• Report Back & Co-Creation: At the end of the deep dive and summit days, participants review and validate the draft, progressively refining it.

3. Roles & Responsibilities

Table Hosts (Lightning Talk Speakers who volunteered):

• Guide the conversation using their seed question.

• Capture 1–2 concise takeaways from their table (principles, safeguards, or commitments for the Charter).

• Share these back during the plenary "wrap-up."

Participants:

• Contribute perspectives from their backgrounds.

• Help refine the key takeaway so it's short and clear enough to add to the Charter.

Facilitation Team:

• Provide a shared online doc "Charter Capture Sheet"  for hosts to note their outputs.

• Consolidate all table contributions into the Charter Draft that grows across the Summit.

4. Charter Outline (Aligned with World Café Themes) 

Day 0 – Deep Dive (24 Sept)

• Report Back & Co-Creation: first drafting exercise → Origins of the Charter.

Day 1 – Morning (25 Sept)

• Transforming Care: Innovation and Equity (Lightning Talks + World Café)

  • WASPI (Dave Parsons, DHCW) → Transparency & governance frameworks.

  • Secure Data for Research (Davide Chiarugi, SPHN) → Trust & security for secondary use.

  • SNOMED CT for Real-World Data (Andrew Roddam) → Standards & interoperability.

  • AI-Driven Digital Tools for Equity (Guru Kora, Times AI Health) → Equity & inclusion.

Day 1 – Afternoon (25 Sept)

• Empowering Society: Engagement and Policy (Lightning Talks + World Café)

  • Digital Tools for Patient Empowerment (Finn McCartney, EUPATI) → Patient empowerment & literacy.

  • Patient-Driven Data Transparency (Ceri Steele & Chris Carrigan, use MY data) → Transparency & trust.

  • Collaboration Platforms for Global Innovation (Mirana Randriambelonoro, gdhub) → Collaboration & global equity.

  • From Policy to Practice (Catherine Chronaki, HL7 Europe) → Standards & policy commitments.

Day 2 – Morning (26 Sept)

• AI, Data & Trust: From Public Health Insights to Sustainable Innovation (Lightning Talks + World Café)

  • Public Health Data Science (Louisa Nolan) → Population health & equity.

  • AI in NHS Wales (Adam Whitter-Jones) → Practical AI & safety.

  • Policy & Strategy (Iñaki Gutiérrez-Ibarluzea, Basque Gov..) → Governance & strategy alignment.

  • HTA & Payment Models (Elena Petelos, EUPHA & HTAi) → Fairness & sustainability in innovation.

Day 2 – Consolidation

• Closing Plenary (26 Sept, 12:20–13:10) → Consolidation & validation of the Charter draft.

5. Next Steps Beyond the Summit

• Post-Summit Draft: Consolidated and circulated to all members for further feedback.

• Open Enrichment: Online contributions and endorsements to broaden ownership.

• Future Adoption: Refined versions to be showcased and potentially endorsed at future global events (Dubai Think Tank 2025, Glasgow Think Tank 2026, Bilbao Summit 2026).

Important Note to all Summit Members

This process is intentionally experimental and will unfold with only as much structure as needed. We invite you to approach it in an open and unconstrained way, allowing conversations to flow at a relaxed pace. The aim is to let the richness of our dialogues naturally shape a shared Charter – a living document that reflects our collective vision for trustworthy, responsible, and impactful use of health data for secondary purposes.