Solving society’s complex challenges requires experts working together, studying data collected for different purposes and from different sources and locations.
However, combining data is challenging. There are public concerns about data security and access, especially for health data. Data governance (legal and ethical frameworks for data sharing) is critical. There are technical challenges in combining data collected in different ‘data languages’ and in building secure computer networks which enable collaborative work whilst protecting privacy.
FED-NET builds on the research team’s success in setting up and running PIONEER, the HDR UK data hub for acute care, providing a scalable solution to the technical and governance challenges of analysing datasets separated by geography and data language. Working with patients, the public, analysts and clinicians, the team has co-designed a secure way to combine sensitive health data with other data, working across five NHS hospitals. They have co-built a transparent governance process, ensuring data access is legal, with full public oversight.
This project scaled existing trusted research environments (TREs) – secure environments that enable large scale data analysis whilst protecting privacy – using ‘federated analytics’, where the data stays put and the analysis moves.
The project tested how different data languages can be translated into a common standard, focusing on data highly valued in research but rarely available, using a study of asthma. It tested governance solutions through workshops with both members of the public and experts.
Principal investigator: Professor Elizabeth Sapey, University Hospitals Birmingham
Funded amount: £319,379