The DARE UK Driver Projects: Working with the public to promote advances in ‘big’ and ‘sensitive’ data research
DARE UK (Data and Analytics Research Environments UK) ran five Driver Projects aiming to revolutionise the way researchers process, manage, and release research conducted using potentially sensitive data, such as personal health data. These projects tackled various aspects of data management, with the shared goal of making it easier and more efficient for researchers to access sensitive data while upholding data security and privacy principles.
Through public involvement and engagement (PIE) activities, the DARE UK Driver Projects understood the public’s perspectives and concerns about managing sensitive data in a network of trusted research environments (TREs). This blog details the projects’ efforts, the insights they gained from PIE activities, and how these informed the projects.
Getting started
DARE UK was funded with public money through UK Research and Innovation (UKRI) – the UK’s largest public funder of research and innovation – to explore the potential for data research to be conducted efficiently across sectors on a national scale. Since its launch in July 2021, DARE UK has managed a series of groundbreaking projects designed to enhance how sensitive data, such as health, administrative data, etc., is accessed, processed, and analysed across the UK for research in the public benefit.
DARE UK’s vision is to design and deliver a coordinated and trustworthy national data research infrastructure to support UK-wide, cross-domain research for the public good.
“Data access in the UK fundamentally needs to change in order for research and outputs to improve.”
Professor Simon Thompson, Swansea University. TELEPORT project Principal Investigator (PI)
The five ‘Driver Projects’
After the first portfolio of nine Sprint Exemplar Projects was completed in August 2022, DARE UK launched five new projects in February 2023 known as ‘Driver Projects’, which involved collaborations between several UK universities and other organisations in the data research space over an eight-month period.
Each project focused on different aspects of data research management, from data access, processing and analysis to the checking and release of outputs. Stitching all projects together moves us a step closer to the central goal of making it easier and more efficient for researchers to access sensitive data WITHOUT compromising principles of data security and privacy.
Data research is a fast-moving space and needs a lot of work and discussion so that we can all benefit from good-quality research in the future.
Did you know?
Sensitive data is usually housed in a secure computing environment known as a Trusted Research Environment or TRE.
Over nine months, the DARE UK Driver Projects devised innovative ways to support creating a nationwide network of TREs. The outputs from the projects have laid some of the foundations to enhance the efficiency of sensitive data research across the UK.
Being accountable to the public
Because these projects were focused on sensitive data, it was important that the research teams liaised with members of the public to understand their perspectives and concerns and be held accountable. Through open communication and transparency, a close relationship was formed with members of the public, which was essential in building trust and creating the safe space needed to both understand and interrogate each project in the required detail.
To support this, all five projects had PIE activities managed by a project PIE Lead. These activities were slightly different for each project but included surveys, online meetings, workshops, and members of the public embedded in project teams.
“People have an awful lot of concerns around what’s happening with their data – around who’s using it, for what, or is it being sold? For all sorts of data research, we rely on public trust. And when we don’t have that trust, we don’t get the data. And without that data, we build schools in the wrong place, we build roads in the wrong place – we can’t plan for what the country needs to look like.”
Professor Jim Smith, University of the West of England. SACRO Project PI
Through these PIE activities, each project team could better understand the perspectives and concerns of the public regarding TREs and the management of sensitive data. This generated insights and ideas, which helped shape the direction of their work.
For example, a particular challenge for the SACRO team was the complexity of the process within a TRE and working out how to communicate this process to the public. The project team held public meetings and found these particularly useful in overcoming this challenge, as the public group helped the team to develop and simplify a flow chart, which conveyed this process in a digestible manner.
“There was a public voice challenging us throughout. How are we going to communicate that? How to we make it accessible? Members of the public brought a different perspective to the project.”
Katie Oldfield, Public Involvement and Engagement (PIE) Lead
“The majority of the public have no idea their health information is being sent to a database for use for research. I think they would be happy with this as long as they were assured it is safe, anonymised and would make a difference to the nation’s health.”
Survey Respondent, SATRE
What comes next?
The five DARE UK Driver Projects have made impressive strides in addressing several challenges related to TREs that will help unlock future research, but there is still work to be done. In some cases, more work is needed to develop more solutions, while in other cases, the focus is to improve existing technologies. But what remains is the need to keep public voice front and centre of the process through meaningful public involvement and engagement efforts.
As public awareness on the importance of data research grows, an increasing volume and variety of sensitive data will become more accessible in TREs. DARE UK and partner organisations will therefore play a vital role in supporting data research innovations to meet the evolving needs of the public.
We all deserve to benefit from future research breakthroughs, and the key to unlocking these benefits is making sensitive data as easy to access as possible by approved researchers in a transparent and responsible way.
Learn more about the five DARE UK Driver Projects
