BLOG - Public attitudes on data sharing: ‘With us, not to us’

In this guest blog, Dr Vicky Gorton and Dr Morgan Currie, from the University of Edinburgh, reflect on the findings from their research into attitudes of those in receipt of benefits towards the sharing and linking of benefits data for social security administration and research.

Introduction

There is increasing recognition of the need to meaningfully involve and engage the public in data research and public service design. The Public Engagement in Data Research Initiative (PEDRI) and public panels, such as ADR Scotland and RDS’ joint ‘Scotland Talks Data’ public panel, offer best practice approaches to gathering the views of a broad range of people on data research projects and systems. However, not all individuals are able to participate equally in these initiatives.

Our research, produced in collaboration with the Minimum Income Guarantee Expert Group, aimed to begin a dialogue about data sharing with individuals who receive benefits payments in Scotland. As part of our research, we ran seven focus groups, speaking to a total of 41 individuals who receive benefits, to understand their views on four scenarios where data about them could be shared. Three of the scenarios centred on data sharing for the administration of benefit schemes (‘operational purposes’) and one on the sharing and linkage of benefits data for research.

Findings

Across all our focus groups, people had a clear understanding of the term ‘personal data’ and many were already aware of how data about them is held and shared for the administration of benefit schemes. Whilst some were trusting of this type of sharing, many were not and were concerned about keeping their data safe.

When discussing the four scenarios, participants expressed different views depending on the purpose and the design of the scheme. Many saw how data sharing could help ensure entitlements for those who qualify for them, potentially reducing stigma and administrative burden for individuals. But they also had questions about data security, accuracy of the data, their ability to choose what happens to their data, and how data sharing activities would be communicated.

Data sharing for research

Participants could see how data sharing could facilitate research for the public good and help to improve policy schemes:

‘It’s being used, hopefully, mostly for the benefit of people rather than as a government justification for cutting benefits or for changing benefits for the worse. The data is there, as long as it’s used in a proper manner I don't see any issues with researchers being able to access the information.’

Many were more trusting of data being shared for research purposes than data being shared between government agencies. In particular, many felt positively towards the 5 safe’s framework that is in place for sharing research data and commented on the lack of such safeguards and ethical frameworks (as presented in our scenarios) when data is shared for administrative purposes.

When asked about what research they would like to see their data used for, participants suggested studies around health and mental health, the impacts of lowering benefits, housing conditions and education.

Reporting back: ‘Even though it is anonymous, it’s still your data.’

We completed a further two community discussion events at community centres in Edinburgh as part of the ESRC’s 2024 Festival of Social Sciences to share our findings with our participants and the wider community. At these events, artist Jenny Capon captured the discussions in the images included in this article. These discussions broadly reflected those had as part of the focus groups.

Our research has shown it is important that discussions around data sharing are grounded in specific scenarios and case studies, as views can vary considerably.

Across all of our events, there were lively discussions around data sharing, with many participants having strong views about what happens to their data and a desire to continue to be involved in conversations around data sharing.

For more information about our project, please see our project website and our full report.

This article was published on 07 Jan 2025

Author

Dr Vicky Gorton