Society needs to scale up a collective capability to learn at scale from health data, to improve health care and to accelerate research. Despite increasing volumes of health data being collected in digital form there are many barriers to widening the uses of it. Many of the barriers are well recognised, but they now need multiple stakeholders to work in a cohesive way to identify the best solutions and then to take actions that mitigate the barriers 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 create a series of multi-stakeholder Round Tables to examine these challenges and opportunities of health data, and to propose practical approaches and calls to action that could grow and accelerate health data use. Each Round Table had about 40 participants from Europe including international institutions, national governments, industry, academia, hospitals, healthcare professionals, regulators and patient representatives.
As at the end of 2022, we have convened 5 Round Tables each with three Working Groups tackling separate topics and at the conclusion of the Round Tables we published written recommendations and reports.
The Round Tables summarised here were held during a period when the European Commission had announced plans to establish a European Health Data Space (EHDS), and was seeking inputs from European stakeholders on challenges it may face and approaches it may consider adopting. These recommendations and reports are highly relevant for the proposed EHDS and were intended to assist its design, governance model, development and future implementation.
Round Tables 9 & 10
Round Table 9: Ensuring representative and high-quality data access for the development of AI for healthcare research and commercial uses
Round Table 9 was designed to discuss ensuring representative and high-quality data access through the EHDS for equitable and inclusive research and innovation, including personalised medicine and AI. This Round Table looked to identify the risks, mitigations and success factors for ensuring a balanced and equitable representation of population subgroups within research conducted via the EHDS secondary use provisions.
Round Table 10: Accelerating the uptake and maximising the benefits from AI Solutions in healthcare
Round Table 10 tackled accelerating the uptake and maximising the benefi ts of AI solutions in healthcare. AI-based tools are increasingly integral to clinical practice, supporting diagnosis, triage, and treatment planning across diverse specialties. Yet healthcare professionals often face a signifi cant information gap when it comes to understanding how these systems are built, validated, and maintained, how to use them and how to detect and escalate concerns about their functioning and advice. Many tools enter the market with documentation that is either too technical for clinicians or too general to support informed decision-making.