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This report presents the findings of a multi- stakeholder round table consultation, in the form of consensus papers from three Working Groups to examine the acceptance criteria for societal trust in the use of health data and a recipe for trustworthy digital health: standards, architecture and value.

The three Working Groups were developed and convened by the Digital Health Society (DHS) and  The European Institute for Innovation through Health Data (i~HD) neutrally and independently from the event sponsors, Johnson & Johnson and Microsoft. 

A total of 50 participants, distributed evenly amongst the Working Groups from EU and international institutions, national governments, industry, academia, hospital management, healthcare professionals, regulators, and patient representatives.

These topics take a deeper dive on three of our 7 2020 Calls to Actions on Health Data Ecosystems, specifically Action 4 (Demonstrate benefits to society from data access, use and reuse), Action 5 (Adopt a risk stratification approach), and Action 6 (Build trustworthyframework for data access and use). Consensus papers were developed and agreed through a combination of online meetings, email discussion and shared document editing.

The recommendations cover the following key themes:

  1. Raise the digital, literacy & skills of all stakeholders
  2. Generate and value trustworthy Real World Evidence
  3. Accelerate interoperability across Europe and globally
  4. Demonstrate benefits to society from data access, use and reuse
  5. Adopt a risk stratification approach
  6. Build a trustworthy framework for data access and use
  7. Adopt a transformational approach to health data

This initiative is supported by Johnson & Johnson and Microsoft