DARE UK welcomes Commons’ call for evidence on ‘The right to privacy: digital data’

On Friday, the House of Commons Science and Technology Committee closed its call for evidence to inform its inquiry on ‘The right to privacy: digital data’. Hans-Erik G. Aronson, Director of DARE UK Phase 1, discusses the importance of the inquiry and what it means for DARE UK.

The multi-phase DARE UK (Data and Analytics Research Environments UK) programme aims to design and deliver a more coordinated and trustworthy national data research infrastructure for the UK. This is specifically to support cross-domain, cross-jurisdictional linkage and analysis of sensitive data at scale for public good.

The goal is a secure, interoperable data research infrastructure, based on collaboratively agreed and adopted open standards, and aligned with wider domestic and international efforts in this space.

In its call for evidence to support its inquiry on ‘The right to privacy: digital data’, the Science and Technology Committee requested views on: the benefits of and barriers to data sharing and use; current approaches of the UK Government to data governance; the ethics surrounding data use; data privacy and safeguards; and existing governance arrangements. A key focus of the inquiry is on transparency and public trust.

Our initial Landscape Review, published in October last year, highlighted that there are many existing barriers to the effective use of sensitive data for research in the public benefit:

First, not all existing data is available for research, and there may be limitations on the capacity of trusted research environments (TREs) – secure digital systems that hold and provide access to sensitive data for approved researchers – to support the research of all those who want to access and use data for projects in the public interest.
The UK’s existing network of TREs do not always work in a coordinated way or follow the same processes and standards, for example in terms of data access and accreditation, and ethical governance. They are often not able to effectively ‘communicate’ with one another to enable linkage and analysis of data held across different systems.
Furthermore, good, consistent governance models, coupled with robust controls that are transparent and trustworthy and ensure data is accessed only for research in the public benefit, are essential. However, these processes need to be streamlined to enable faster data access. Whilst there is always some element of risk when making sensitive data accessible for research, we must be mindful of the impacts of not making data available – or with undue delay – when there is real potential to benefit society.

Phase 1 of the DARE UK programme – ‘Design and Dialogue’ – is all about engaging with a range of stakeholders – including researchers, technologists, the third and private sectors, and the public – to identify the current challenges faced across different organisations, sectors and disciplines, and propose solutions to address them. This work is being led by Health Data Research UK and Administrative Data Research UK on behalf of UK Research and Innovation.

We therefore welcome the Committee’s inquiry and look forward to its findings. The outputs will be of great relevance to DARE UK Phase 1’s goal of providing recommendations for improvements to the infrastructure which underpins the use of sensitive data for research across the UK.

If you want to share your views about how the UK’s data research infrastructure could be more coordinated, efficient and trustworthy, join us for a series of online workshops this March. Find out more and register now.