The fourth instalment of our Driver Projects blog series puts the spotlight on the TRE-FX project, whose remit was to explore ways to enable collaborative data analytics across trusted research environments in the UK. Learn more about the project’s accomplishments and dynamic public involvement and engagement strategy.
The third issue of our Driver Projects blog series focuses on the TELEPORT project, whose exploits introduced the concept of federated data access – a first among UK trusted research environments. This approach, developed in collaboration with the public, unlocks new opportunities for deeper, broader and more secure research with sensitive data.
The second issue of our Driver Projects blog series showcases the SATRE Project’s efforts to streamline the standards for setting up and managing trusted research environments to enable cross-functional efficiency. Find out how the project achieved this through consultations with the public and the wider research community.
In the first issue of our DARE UK Driver Projects blog series, we discuss the exploits of the SACRO project in ensuring that research findings do not compromise individual privacy. Find out more about the project’s final outputs and their collaboration with members of the public in this piece.
Courtesy of the HDR UK Black Internship Programme, DARE UK had the pleasure of welcoming Abigail Ngwang, a medical student at the University of Leeds, to the programme delivery team for a period of 8 weeks. During her internship with the programme, Abigail supported the development of a public-friendly information kit on the DARE UK Federated Architecture Blueprint.
In its efforts to demonstrate the use of secure digital objects to standardise data transfer to and from Trusted Research Environments (TREs), the TRE-FX project is embedding public involvement and engagement strategies to uphold transparency and public participation in decision-making.
By connecting national-level data holdings in Wales and Scotland, TELEPORT is enabling secure access to improve research quality, leading to better health outcomes. In achieving this, TELEPORT is placing a strong emphasis on Public Involvement and Engagement (PIE), involving lay members in governance panels, appointing a public advocate, and seeking feedback to ensure transparency and public benefit.
Through deliberative workshops and surveys, SARA continues to involve the public in all aspects of delivery, bolstering trust and ethical practices. The project’s inclusive approach heralds a progressive era for data research and governance, amplifying its impact on the wider data research landscape.
In this article, Dr Colin Mitchell and Dr Elizabeth Redrup Hill, colleagues at PHG Foundation (a University of Cambridge charity), discuss their report on the concept and status of synthetic health data under data protection law, providing recommendations for developers, researchers, regulators, and policymakers to balance privacy protection and research potential.