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.
The Round Tables covered the following topics:
Round Table 1: 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.
Round Table 2: A recipe for Trustworthy digital health: standards, architecture and value (October 2020)
Health data is largely collected in multiple siloed health record systems, of variable quality and challenging to integrate for research, public health planning and healthcare quality improvement.This Round Table examined the data, systems and architectural challenges and approaches that are needed to ensure that health data is usable, combinable and of a sufficient quality for accurate analysis.
- WG1 Improving the (re)usability of data through standards.
- WG2 Enabling large scale timely access through adapted architecture
- WG3 Sustaining data sharing and access by demonstrating value. And trustworthy decision-making.
The outcomes of the two Round Tables were combined and consolidated into seven transformation areas, with seven corresponding Calls to Action. These Calls to Action were published in February 2021.
The feedback from many stakeholder groups following the publication of the calls to action highlighted the importance of examining these seven areas in greater depth, in particular to look for more specific approaches, recommendations and actions that could be taken. Through renewed industry sponsorship, the DHS and i~HD were able to convene to further Round Tables during 2021.
Round Table 3: Proposing a common basis for health Data access across Europe (May & June 2021)
This multi-stakeholder round table examined the strategies for providing public assurance, winning societal trust and proposing good practices in data access decision-making. The report is structured in three complementary sections reflecting the working group topics:
- WG1 Transparency and trustworthy decision making
- WG2 Social Compact and returning value from data use.
- WG3 Risk and reward: Data Protection for navigating evolving risk requirements to realise the benefits of health data innovation.
A report of Round Table 3 was published in September 2021.
Round Table 4 :Scaling up the availability and reusability of big health data (October & November 2021)
This round table looked at three data and architectural areas that the Calls to Action had highlighted as the most important enablers of large-scale data reuse: improving the uptake of interoperability standards, benchmarking and improving data quality, and promoting the adoption of large scale, usually Federated, health data infrastructures.
- WG 1 Interoperability standards alignment and adoption
- WG 2 Data quality benchmarking and improvement
- WG 3 Designing health infrastructures for large scale data reuse.
A report of Round Table 4 was published in March 2022.
Round Table 5: Immunisation information systems: Making interoperable data systems for vaccination a reality in Europe (June & July 2022)
This report presents the findings of two multi-stakeholder Round Table meetings that explored, and have proposed recommendations for how Europe and its Member States can advance effectively and rapidly towards having the most functionally suitable and interoperable information systems used to run, document, and evaluate immunisation programmes.
A report of Round Table 5 was published in November 2022.
Round Table 6: Proposal for a Societal Compact for the Secondary use of Health Data
The Round Table programme comprises of 2 virtual meetings of up to 30 multi-stakeholder experts from across Europe to discuss important health data and digital subjects. The Digital Health Society and I~HD then independently create reports with recommendations for actions to address the issues identified in the Round Table.
In 2020 Round Tables 1&2 created 7 Calls to Action to help shape the development of the European Health Data Space. Round Table 3 developed the concept of a Societal Compact as a way of enabling access to health data. Round Table 6 deep dived into the idea of a Societal Compact and has created a proposal to create the first Societal Compact. If there is good support from stakeholders, the proposal could form the basis for the development of the first Compact for signature by supporting organisations and individuals.
We note the UN is developing a proposed Digital Compact and it will be interesting in due course to see what exactly this proposes and includes. At the UN General Assembly Science Summit in September 2023 we will outline our Proposal for a Societal Compact for the secondary use of health data.
