From Data-Driven Medicine

Building a trustworthy national data research infrastructure: A UK-wide public dialogue

Richard was part of the oversight group for this UKRI DARE-UK public dialogue exploring views towards data research practices

Project: Data-Driven MedicineType: Impact on PolicyContributor: Richard Milne

Building a trustworthy national data research infrastructure: A UK-wide public dialogue

1st May 2022

People want trustworthy researchers to have better access to their data. But only if they’re told about it.

DARE UK has today (5 May 2022) published the findings of a UK-wide public dialogue exploring views towards data research practices, and where improvements need to be made to increase public confidence.

We know from over a decade of previous research that the public broadly support the use of their sensitive data in research – data about their education, health, welfare, employment and more. But we also know that this support is conditional on the safe storage and appropriate use of that data, and trustworthiness is crucial [1]. The importance of continuing to understand what the public want – particularly since the beginning of the COVID-19 pandemic and associated developments in how data is accessed and used for research – and meeting their expectations, cannot be underestimated when making use of sensitive data.

In January and February this year, DARE UK and Kohlrabi Consulting delivered a series of deliberative workshops with 44 members of the public from a diversity of backgrounds and identities from across England, Northern Ireland, Scotland and Wales. Participants had low existing awareness of how sensitive data is used in research, but showed widespread support for data research and were reassured by processes currently in place to protect their data. They wanted all types of researchers – including commercial organisations – to have access to their data when the proposed research is in the public benefit.

However, participants were surprised by how long and hard it can be to access data and wanted to see these processes improved, so that public benefit can be realised more quickly. They also felt the public are currently left in the dark about data research. For it to be more trustworthy, they saw a clear need for data custodians and researchers to more proactively reach out and tell the public about what is being done with their data, how and why; and to meaningfully involve an inclusive public in their work. The dialogue’s findings resonate with those of other recent conversations with the public [2, 3].

The DARE UK programme – which is currently in its first Phase, led by Health Data Research UK (HDR UK) and ADR UK (Administrative Data Research UK) – will now take the dialogue’s findings and recommendations forward in partnership with key stakeholders, including public representatives, to design and deliver a more joined-up, efficient and trustworthy national data research infrastructure. The report is also a useful addition to the evidence base for others who want to make sure they are handling and using sensitive data for research in a trustworthy way.

Richard Milne is an oversight board member for UKRI DARE (Data and Analytics Research Environments) UK public dialogue on trustworthy research environments.

Related Link:


Building a trustworthy national data research infrastructure: A UK-wide public dialogue (2022) DARE-UK, May