Proposing a common basis for health data access across Europe
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 Soceity (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 trustworthy framework 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:
- Raise the digital, literacy & skills of all stakeholders
- Generate and value trustworthy Real World Evidence
- Accelerate interoperability across Europe and globally
- Demonstrate benefits to society from data access, use and reuse
- Adopt a risk stratification approach
- Build a trustworthy framework for data access and use
- Adopt a transformational approach to health data
This initiative is supported by Johnson & Johnson and Microsoft