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Data research infrastructure refers to the systems and processes that support research and analysis using data. It includes physical systems, such as the data centres where the data itself is held; computer software that researchers use to analyse data; governance processes, such as those guiding who is able to access what data and for what purposes; and the people who run the systems and do the research. It is everything that makes data research happen.

A trusted research environment (TRE) is a highly secure digital environment that provides access to sensitive data for analysis by approved researchers. A series of strict security measures protect the privacy of the people the data is about, significantly reducing the potential for data misuse or the possibility of re-identification of de-identified data. This enables researchers to securely analyse data as part of important projects to inform policy and practice and improve lives.

Sensitive data is data which contains personally identifiable information such as names, addresses and identifying numbers. This data can still be sensitive once it has been de-identified (has had all personal identifiable information removed), particularly if there is potential for re-identification when used with other data. Commercial data such as retail information, business details or confidential product details may also be considered sensitive when used for research.

A ‘federated’ network of trusted research environments (TREs) is one which would allow analysis of sensitive data to be conducted across different TREs. This is because the TREs would all follow the same security and governance protocols, and the different systems used across them would be able to work together coherently. This can occur in two different ways: in the first approach, the analysis of multiple sets of data occurs in the TREs in which they are held, and the results are brought together centrally in one TRE for final review. This approach works well for analysis on comparable data held in different TREs. The second approach is to temporarily combine the data, allowing approved researchers to access and analyse data within any TRE in the network, rather than only within the one where the data is held. This approach may be appropriate for linking data held in separate TREs together, particularly in case where the data is less easily comparable.

Data has the power to improve lives, and has been fundamental to the UK’s response to the COVID-19 pandemic. As the UK moves out of the critical phase of the pandemic and into recovery, there is an opportunity to re-evaluate the investments that have been made in the UK’s data research infrastructure to ensure they are joined-up, impactful and able to support research at scale for the benefit of the public. They need to be able to support fast and efficient sharing, linkage and advanced analysis of sensitive data in an ethical and secure manner, whilst having the confidence – and meeting the needs of – researchers, data controllers and the public.

Vision

For all research and innovation to benefit from seamless, secure use of diverse sensitive data at a pace, efficiency and scale that revolutionises research productivity and accelerates research to deliver public good.

Mission

To put the UK at the forefront of sensitive data research and innovation by assembling the tools, technologies and standards needed to streamline secure data linkage and use.

The final DARE UK output will depend on current and future work outcomes.

DARE UK Phase 1, which ran until March 2024, was a listening phase. The intention of Phase 1 was to consult widely on the requirements for a UK-wide, federated digital infrastructure for sensitive data research that has the confidence – and meets the needs of – researchers, data controllers, and the public.

DARE UK Phase 2, an iterative build, assemble and test process, will support researchers using TREs to do faster and safer research with sensitive data, for example, through new capabilities in federated analysis and safe training of AI models. The programme will continue to work with and convene stakeholders across the research ecosystem to deliver this.

We are committed to public involvement and engagement (PIE), which is embedded throughout the DARE UK programme to inform our planning and delivery and ensure we are working in a trustworthy way. We have a detailed PIE strategy and a Public Advisory Group (PAG) consisting of four public contributors, which meets every quarter and provides valuable input into programme activities and decision-making processes on an ongoing basis. In addition to our first UK-wide public dialogue, we aim to run a series of public dialogues and workshops to explore public views on what a trusted and connected national network of secure data research infrastructures should look like.

Having diverse views and opinions is crucial when meaningfully involving the public. As such, DARE UK will be running several public events in Phase 2, for which special efforts will be focused on involving diverse people via outreach and recruitment exercises. For our public dialogues and workshops, for example, we seek social research expertise to assist us with recruiting a diverse range of participants from across the UK with different backgrounds and identities. We also build relationships with existing public networks to reach different audiences with a wide range of values, views and opinions.

We seek ideas from a wide range of organisations of all types and sizes. We are looking to build a set of recommendations supporting the development of a network of trusted research environments (TREs) suitable for different research styles and various data types. Therefore, any future federated data and analytics infrastructure must be suitable for a diverse mix of research needs and based on open standards to make it accessible to the full range of organisation sizes and capabilities.

DARE UK collaborates with and complements other data research-focused investments and initiatives across the UK (and potentially beyond). DARE UK will continue its ongoing dialogue and engagements with new and existing stakeholders to understand how the programme fits into the broader UK data research landscape and adds value to all relevant parties.

The DARE UK programme is funded by UK Research and Innovation (UKRI). UKRI is a non-departmental public body sponsored by the Department for Science, Innovation and Technology (DSIT). UKRI has commissioned Health Data Research UK (HDR UK) and Administrative Data Research UK (ADR UK) to lead the delivery of Phase 1 (Design and Dialogue) and Phase 2 (Build, Test and Establish) of DARE UK from July 2021 – March 2027.

UKRI has commissioned Health Data Research UK (HDR UK) and Administrative Data Research UK (ADR UK) to lead the delivery of Phase 1 (Design and Dialogue) and Phase 2 (Build, Test and Establish) of DARE UK from July 2021 – March 2027. The DARE UK Delivery Team is based at the HDR UK offices in Euston, London.