Helping families have more trust in administrative data linkage

Research led by Southampton is helping ensure families have confidence in the digital administrative data that is shared about them.

Their research shows that public confidence in administrative data practices is weak and recommends that if social legitimacy and trust is not to be further undermined, then more effort needs to be made to enforce data rights and transparency.

Professor Rosalind Edwards, from Sociology at Southampton, is leading a team of researchers from Southampton and Westminster in the UK Research and Innovation and the Economic and Social Research Council-funded project.

The project team has created an animated video for parents and contributed to government enquiries and consultations.

Families’ administrative records are routinely digitally created, stored, shared and analysed by the national and local government services that they come into contact with.

Agencies such as social care, education, health, benefits, and the police regularly link data such as taxation, medical records, pupil data, and police records for a range of purposes such as identifying families that would benefit from early intervention. This is known as administrative data linkage.

This data linkage offers the promise of more efficient public services based on predicting risk to pre-empt problems, but difficult issues have been raised about data security, consent, and the extent of public acceptance and trust. It has also raised the questions about whether this data linkage is deterring patients from using services.

The study filled a vital gap in the knowledge about and trust in operational data linkage and analytics among parents of dependent children where policy developments and data practices are moving ahead of public knowledge and consent.

The team surveyed parents and family service users across the UK to find out what they know about how data on them and their children is collected, shared and used by local services.

Their key findings included:

• Transparency and informed consent matters to parents
• Trust in the linking and analysing of administrative data among marginalised populations is fragile  
• There is mistrust about the accuracy and fairness of predictive analytics

The team’s recommendations included:

• Explicit and informed parental consent should be sought to link data at regular intervals
• A right to view should be provided for all personal data held online by local authorities
• There should be a right to opt-out, apart from in the case of child protection concerns

The research highlighted that the sharing and linking of data among public services working with children and families has the potential to undermine trust, especially among marginalised social groups, with consequences for a cohesive and equal society. 

The research team recommended that policymakers and service providers need to enter into robust discussions about the risks as well as the benefits of administrative data linkage, and to consider and address unintended social consequences.

They developed an animated video that helps parents understand how data on them and their children is collected, shared and used by local and national government services. They hope this video will prompt discussions among parents and groups working with parents to make sure they are better informed and better equipped to challenge the processes they feel need challenging.

The team has also submitted policy briefings and evidence to government enquiries and consultations, and have published articles in peer-reviewed journals including:

• Written response to the UK Government Cabinet Office consultation on draft legislation to support identity verification (28 February 2023)
• The Governance of Artificial Intelligence: written evidence to the Parliament Science and Technology Committee (2022)
• The Right to Privacy: Digital Data: written evidence to the House of Commons Science and Technology Committee (2022)
• Data: A New Direction: written submission to the Department of Digital Culture, Media and Sport Public Consultation (2021)
• The role of public services in addressing child vulnerability: written evidence for the House of Lords Public Services Committee (Select Committee)