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.
Acceptance criteria for societal trust in the use of health data
September 2020
Even when data users fully comply with data protection legislation (primarily, the EU GDPR), there is plenty of evidence that the public remain concerned that their health data should be used appropriately, transparently, with accountability and only if there are clear benefits to society from the use. This Round Table examined the issue of societal trust, and what assurances might be acceptable and feasible to provide. It covered three main areas, as working groups, each with multi-stakeholder participation.
-WG1: The who, what and why of data use and reuse.
-WG2: Organisational approaches: Safety and Acceptance.
-WG3: Transparency & Trust about data use and value.