BIA Submission to Sudlow review on unifying health data in the UK

The BIA has responded to the Sudlow Review on unifying health data in the UK.

In our submission, we discuss the current challenges and potential solutions to unifying health data in the UK.

Challenges

National data broken into subscale datasets and organisations: most data is held by sub-national organisations without the resources to allow secure, efficient data access
Government initiatives supporting the continuation of subscale datasets and organisations - recent and ongoing initiatives (HDR UK hubs, Data for R&D programme) have supported local, regional and disease-specific data access
Fragmented systems and formats - numerous Secure Data Environment (SDE)s operate independently, using different formats and standards for data storage and exchange, leading to compatibility issues.
Lack of common infrastructure - there is no centralised health data repository, making it challenging to share and access data, particularly for SMEs
Variable data quality - inconsistent data quality across different organisations impedes research and usage
Public-private data disparity - health data is stored by both public and private entities, which follow different priorities and incentives, resulting in a scattered health data landscape

Proposed Solutions

National platform - government support should be moved from subscale SDEs to one single platform
Interconnectivity - a unified system with a single access point, standard data models, interoperability, and data search across all SDEs is recommended
Standardised information and KPIs - clarity on data availability, uses, and limitations is essential, with standard KPIs for all health data organisations focusing on data and capabilities
Standardised SLAs - clear service expectations, decision-making transparency, standardised application processes, and agreements are needed
Accreditation - similar to data safe haven authentication, accrediting users and organisations would ensure appropriate data analysis training and experience. Central control or standardised data collection would help streamline multiple data access
Uniformity of technical abilities and security - SDEs should support innovation and offer clear SLAs outlining technical services. Access to a public secure data environment and innovative proprietary analytical pipelines (PAPs) should be available to all users.