DARE UK Transformational Programme: core components "TREvolution"

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.

Personal data is information which relates to a living identifiable individual and, by law, must be treated and managed securely. It may be used for research purposes as long as the security, anonymity and people’s rights are not compromised. Trusted Research Environments (TREs), (also called Secure Data Environments), are a software mechanism that allow health data from different sources to be combined, de-personalised and then made available for approved researchers to analyse within a secure virtual environment. The research has to show that it will lead to advances which will benefit the lives of the public across the country. The UK provides principles (“Five Safes”) to ensure TREs handle data safely.

The TRE approach has been successful in providing suitable safeguards and controls for the people who govern access to sensitive data to increasingly support research and analysis of more and more sensitive datasets from a wide range of sources. Crucially, data never leaves a TRE. Researchers can analyse data within a TRE but cannot copy or remove it. Data is visited (like a reference library) rather than taken out (like a lending library).

The growth in the number and types of TREs across the UK means that we need to challenge current assumptions. Existing analytics, approaches, and governance used by TREs assume that the data is in one location and that a human has the time, knowledge and know-how to manually check all results that leave. However, the types of analyses researchers undertake are becoming increasingly complex, especially with modern AI. Researchers need to safely combine and analyse data from across multiple TREs, and speed-up manual processes. The best studies during the pandemic were those able to run the same analyses across multiple regional, national and international TREs. TREs must evolve so that complex analysis using multiple sources can become more routine while still adhering to the UK’s Five Safes principles.

TREvolution is meeting these challenges, by carefully challenging assumptions without undermining the strong governance foundations that have enabled the analysis of sensitive data to date. Our programme of activities shares a single vision for what capabilities a future TRE should offer to meet the changing needs of the research community, increasing the power of studies through streamlined multi-TRE analysis. We will assemble existing technologies and methodologies into a set of open, coherent and consistent activities. These include: automated human assistance to check results, ways of running analyses over multiple TREs, and a framework of standards for TREs to adopt. To stay on track and forge adoption pathways we will build a reference implementation, partnering with TREs, public advocates and researchers. TREvolution is a keystone component of the DARE programme, benefiting from and contributing DARE activities including pathways for TRE adoption, public engagement and communicating impact.

Enabling researchers to access a broader range of data more easily while ensuring data security brings great public benefits and trust reassurance. New research can be carried out more quickly, informing policy and scientific advances to improve the lives of the UK’s people.