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Health Data Round Tables Update

Published on: 07/12/2022

Health Data Round Tables Update
ECHAlliance

To truly improve healthcare and accelerate research, we must build a collective capability to learn at scale from health data. Although health data is increasingly available in digital formats, many barriers still limit its potential. Addressing these challenges requires coordinated, cross-sectoral collaboration to identify solutions, remove obstacles, and enable better data use.

In 2020, the Digital Health Society (DHS) partnered with the European Institute for Innovation through Health Data (I~HD) to launch a series of multi-stakeholder Round Tables. The goal was to explore the opportunities and challenges of health data and develop actionable recommendations to drive progress. Each Round Table brought together around 40 participants from across Europe, representing government, industry, academia, healthcare, patient groups, and regulators.

To date, seven Round Tables have been held, each supported by three Working Groups tackling distinct themes. Their findings were compiled into reports and recommendations, contributing directly to shaping the proposed European Health Data Space (EHDS).

Topics addressed include:

Round Table Summaries

Round Table 1: Building Societal Trust in Health Data Use (Sept 2020)

Trust remains a key concern, even when data use complies with GDPR. This Round Table examined what assurances the public needs to feel confident in how health data is used.

WG1: Who uses data, for what, and why

WG2: Organisational approaches for safety and acceptance

WG3: Transparency and trust in data value

 

Round Table 2: Standards, Architecture, and Value (Oct 2020)

This session focused on making health data more usable and interoperable through architectural design, data standards, and evidence of value.

WG1: Enhancing data reuse with standards

WG2: Architectures for large-scale access

WG3: Demonstrating data value and fostering trust

Outcomes from RT1 and RT2 led to seven Calls to Action, published in February 2021.

 

Round Table 3: A Common Basis for Health Data Access (May–June 2021)

This Round Table explored strategies for transparency, trust, and responsible data access decision-making.

WG1: Transparency and responsible governance

WG2: Social Compact and societal return

WG3: Data protection and evolving risk

Round Table 3 Report

 

Round Table 4: Scaling Big Health Data (Oct–Nov 2021)

This session tackled the core enablers of scalable health data use, including interoperability, data quality, and federated infrastructures.

WG1: Interoperability standards adoption

WG2: Data quality benchmarking

WG3: Designing infrastructures for reuse

Round Table 4 Report

 

Round Table 5: Interoperable Immunisation Systems (June–July 2022)

Focused on how Europe can rapidly develop interoperable systems to support immunisation programmes.

Round Table 5 Report

 

Round Table 6: A Societal Compact for Health Data Use

Building on previous discussions, this session created a proposal for a Societal Compact, which could become a formal agreement among stakeholders supporting responsible health data use.

Read proposalRound Table 6 Report

 

Round Table 7: Trust and Responsible AI in Healthcare

This session explored how to responsibly adopt AI in healthcare, presenting four key recommendations amidst global regulatory developments.

Round Table 7 Report

 

Round Table 8: Aligning Recommendations with EHDS Regulation (2024–2025)

These final sessions assessed how earlier recommendations influenced the EHDS draft regulation and proposed further actions for its secondary legislation.

Summary Report | Round Table 8 Report

 

NEWS​

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