SACRO Public Involvement and Engagement Final Report

Trusted Research Environments (TREs) play a vital role in enabling researchers to analyse confidential data such as health records then report findings. The Five-Safes Framework is used to ensure data confidentiality and includes Safe Outputs.

Outputs are typically checked by two expert staff before release, which is a significant expense for TRE operators, and can cause a bottleneck for researchers. Meanwhile, the parallel development of TREs and understanding of disclosure-risk, has created a need to consolidate theory and practice to minimise inconsistent behaviour between TREs to retain credibility. Addressing both these issues, this project seeks to reduce the operating costs of TREs, and the time taken to release research results. 

The project will:

 • Produce a consolidated framework with a rigorous statistical basis that provides guidance for TREs to agree consistent, standard processes to assist in Quality Assurance.

 • Design and implement a semi-automated system for checks on common research outputs, with increasing levels of support for other types such as AI. 

• Work with a range of different types of TRE in different sectors (health, social data) and organisations (academia, government, private sector) to ensure wide applicability.

 • Work with public and patients to explore what is needed for public trust that any automation is acting as "an extra pair of eyes": supporting not supplanting TRE staff, helping them to make easy decisions more rapidly, and therefore focus on more complex or nuanced cases. 

 How does it fit into the DARE UK programme?

 All work packages encompass the DARE theme of enabling cross-TRE research by establishing mechanisms for aligning measures of risk appetite and management. 

 Why is PIE important in the delivery process? 

Public trust is essential for Trusted Research Environments to operate. Transparency in changes to process is part of maintaining the trust therefore the engagement with members of the public, and the creation of a lay document as an output contributes to this transparency. 

Understanding what builds trust in the processes will inform the delivery of SACRO as the project team begin to implement changes to the output checking process and create guidance for output checkers.
 

This report summarises and evaluates the Public Involvement and Engagement work which was conducted as part of this project.