Fostering public confidence: How the TRE-FX project is integrating public perspective in its delivery strategy
Federated analytics is a methodology that can perform analyses when data is spread across various sources. In the TRE-FX project, we are developing technical prototypes to demonstrate how federated analytics may operate across multiple Trusted Research Environments (TREs) where there are strict data governance controls in place.
TRE operators face a challenge. There are now many different types of federated analytical tools that researchers may want to use, but for each tool, there isn’t a standard way of handling data, processing analyses or returning results.
To tackle this problem, the TRE-FX project is developing a framework designed to provide a standardised way for federated analytic vendors (academic and commercial) to interact with TREs. The goal is to demonstrate the technical feasibility of a standard method, making it much easier to handle and analyse data remotely. This innovative approach not only helps to enforce data privacy and security but also streamlines and enhances the efficiency of research on sensitive data. Much work is still to be undertaken technically and with the public before these early prototypes can be used in TREs on patient data.
Empowering Public Knowledge
Comprehensive public involvement and engagement (PIE) are central to the TRE-FX project’s strategy. This includes a member of the public chairing management meetings and presenting at conferences. These activities play a pivotal role in ensuring the content presented by the project is suitable for empowering the public with essential knowledge about various aspects of the project, including information about federated analytics, the architecture of the TRE-FX solution, how it gathers the required information in line with the Five Safes framework and how it can be integrated with existing TRE services.
Other activities include generating PIE materials that serve as an educational resource for the public providing insights into the intricacies and benefits of federated analysis. By offering accessible explanations of complex concepts, the project seeks to reduce the gaps between technical language and public understanding, ensuring that the public remains well-informed and engaged throughout. By involving the public in this manner, the TRE-FX project advocates for a transparent and collaborative research approach, instilling public trust and confidence.
Focus Groups Provide Diverse Perspectives
To strengthen its commitment to public involvement, the TRE-FX project commissioned two focus groups and workshops from Alterline. The TRE-FX team created the content and the questions to be asked but had no involvement in running the events to ensure there was no indirect influence on participants. Through these focus groups, the TRE-FX project sought to ensure that the public’s voice is heard in shaping the project’s direction and goals. In addition to gathering valuable insights, the focus group discussions facilitated inclusivity, allowing diverse perspectives to inform the project’s decision-making processes.
In the first workshop, the TRE-FX project gained feedback on the clarity and accessibility of the project content. These discussions addressed critical questions related to the authority responsible for determining whether a federated project can proceed, data resource access regulation, and project outputs’ safety and security. Suggestions from the public workshop were then incorporated into the project’s technical design. Building on the success of the first PIE workshop, Alterline is now signing up people for a second event, where more complex concepts will be introduced, enabling the public to gain a deeper understanding of the mechanisms proposed by TRE-FX to safeguard data privacy and security during analysis.
The TRE-FX project has included the public voice as part of its efforts to enable transparent and accountable research within TREs. By actively incorporating public feedback, assessing potential risks, and nurturing inclusive dialogues, the project has sought to balance technical capabilities with public and governance questions. Through the integration of public perspective into both the project operation and design processes, the TRE-FX project paves the way for research that does not dilute key governance criteria in TREs but reinforces those principles whilst providing a standardised mechanism for researchers to undertake analyses across multiple TREs.
The TRE-FX project is a collaborative endeavour involving ELIXIR-UK, HDR UK, the Universities of Manchester, Nottingham, Swansea, Dundee and Birmingham, University Hospitals Birmingham, and leading technology providers. Its primary aim is to showcase how secure Digital Objects can be used to standardise the transfer of queries and results to and from Trusted Research Environments (TREs) for federated analytics. In addition to technical advancements, the TRE-FX project recognises the importance of public trust and embraces a Public Involvement and Engagement (PIE) strategy to ensure transparency and active involvement of the public in decision-making processes.
*This post was updated on 20 October. Originally, a draft version of the article containing incorrect information was published in error before it had gone through editorial review. We thank those who pointed it out.