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.
In this blog, we examine how regular public updates and feedback incorporation have sustained engagement, making the SACRO project a testament to the power of collaboration in enhancing output checking in sensitive data research.
In the realm of sensitive data research, trust and collaboration are vital for success. That’s why the SATRE project, one of the five DARE UK Driver Projects focused on standardising Trusted Research Environments (TREs) in the UK, has made Public Involvement and Engagement (PIE) a cornerstone of its strategy.
In this interesting piece marking the 75th anniversary of the NHS, Professor Tim Hubbard, Professor of Bioinformatics and Associate Director at Health Data Research UK shares his views on the prospects of a data-driven golden age for health.
The DARE UK Phase 1 Sprint Exemplar Projects made important discoveries towards DARE UK’s overarching mission. This article outlines the reflections and lessons learned from the nine projects and, in particular, the public involvement and engagement outcomes, which have jointly charted the course for future programme efforts.
With the DARE UK Driver Projects well underway, there’s been an overlap of ideas for what an interoperable network of trusted research environments (TREs) should look like. In this blog, DARE UK Technical Lead Rob Baxter distinguishes the parts from the whole.
Elizabeth Waind, DARE UK’s Senior Communications and Engagement Manager, shares her reflections on the trustworthiness of sensitive data research, and why we mustn’t lose sight of public benefit.
