1. What is 'data research infrastructure'?
Data research infrastructure refers to the systems and processes in place to support research and analysis using sensitive 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.
2. What is a ‘trusted research environment’ (TRE)?
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.
3. Can you define ‘sensitive data’?
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.
4. Can you define 'federated'?
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 is appropriate for linking data held in separate TREs together.
5. What are the benefits of creating a UK-wide, federated network of trusted research environments (TREs)?
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.
6. How does Phase 1 (Design and Dialogue) of DARE UK fit into the longer-term vision for the programme?
The purpose of Phase 1 of the DARE UK programme is to understand, through open dialogue with stakeholders – including researchers, technologists, the public and others – what's needed to enable efficient, safe and ethical data research across the UK. That might be novel data research infrastructure, but equally it might not – other mechanisms may prove to be better suited to achieving the programme’s ambition, such as supporting existing infrastructure to improve governance. By taking stakeholder views and the learnings from existing infrastructure, we will ensure that subsequent phases of DARE UK address the needs of the UK in making the best use of data at scale for public benefit.
7. What will the final DARE UK output look like?
DARE UK Phase 1, up to August 2022, is a listening phase. At this stage, we do not know what the final output of the programme will look like. The intention of Phase 1 is to consult 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. The final DARE UK output will therefore depend upon the findings of this work.
8. How will the DARE UK programme ensure there is a focus on public involvement, and not only on the technological requirements for trusted research environments (TREs)?
We are committed to public involvement and engagement, and both will be embedded throughout the DARE UK programme to inform our planning and delivery and make sure we are working in a trustworthy way. We have five public contributors to provide valuable input into decision-making processes, and will be running public involvement workshops aimed at getting to the depth of public views regarding what a trusted and connected national data research infrastructure should look like.
9. How will you engage and involve a diverse cross-section of the public in DARE UK to ensure a wide range of values, views and opinions are accounted for?
Having a diverse range of views and opinions is crucial when meaningfully involving the public. DARE UK will be running a number of public events and workshops throughout Phase 1, for which special efforts will be focused on involving a diversity of people via outreach and recruitment exercises. For our public involvement workshops, for example, we will be seeking social research expertise to assist us with recruiting a diverse range of participants from across different background and identities. We will also build relationships with existing public networks. This will enable us to reach different audiences with a wide range of values, views and opinions.
10. How will DARE UK ensure the interests of mid and small players (such as start-ups and charities) are accounted for when designing a federated network of trusted research environments (TREs)?
During this initial design and dialogue phase we will be seeking ideas from a wide range of organisations of all types and sizes. We will be looking to build a set of recommendations that support the development of a network of trusted research environments (TREs) suitable for different styles of research and different types of data. It is important that any future, federated data and analytics infrastructure is suitable for a diverse mix of research needs and based on open standards so that it is accessible to the full range of organisation sizes and capabilities.
11. Does DARE UK have any link with the UK Data Service?
We are working closely with Economic and Social Research Council (which funds the UK Data Service), including engaging with stakeholders from the UK Data Service. In Phase 1 of the DARE UK programme (up to August 2022), we will be looking at requirements around researcher training and certification – a key focus of UK Data Service activities.
12. Does this initiative integrate with Population Research UK (PRUK)?
There is complementarity between DARE UK and a number of other investments and initiatives across the UK (and potentially beyond) including PRUK. DARE UK will continue current dialogue with stakeholders to understand how this programme fits into this landscape to add value to all parties.
13. How is DARE UK funded?
The DARE UK programme is funded by UK Research and Innovation (UKRI). UKRI is a non-departmental public body sponsored by the Department for Business, Energy and Industrial Strategy (BEIS). UKRI has commissioned Health Data Research UK (HDR UK) and Administrative Data Research UK (ADR UK) to lead Phase 1 (Design and Dialogue) of DARE UK from July 2021 – August 2022.
14. Where is DARE UK based?
UKRI has commissioned Health Data Research UK (HDR UK) and Administrative Data Research UK (ADR UK) to undertake Phase 1 (Design and Dialogue) of the DARE UK from July 2021 – August 2022. The DARE UK Phase 1 team is based at the HDR UK offices in Euston, London.