Author: Rosalind Edwards

Our project team look at responses to a pilot survey of parents undertaken ahead of their new research.

National and local government departments and services collect and hold a range of information about parents and their children. These records include details of the taxes people pay, their medical records, school data and police files. But what do parents think about the idea of the data held on their children being linked with theirs, so that government services can identify families for possible interventions? A pilot survey leading up to a new research project indicates they’re not very keen on the idea. 

Data linkage is a hotly-debated topic with arguments about better targeted, more focused public services often counter-acted with concerns around privacy and lack of trust in the organisations collecting and using the data. 

When it comes to the use of linked data to identify families where it’s thought there may be heightened risk of things such as child abuse or neglect, or truancy and anti-social behaviour, there can be few more contentious areas. But real evidence on what parents think is thin on the ground and this is where our research project hopes to make some inroads and get a better handle on things. 

Pilot survey

A voluntary pilot survey of parents carried out via the Mumsnet website and Twitter received a total of 365 responses – mostly from white mothers from relatively well-off households. We might assume, this group might feel more secure about the linkage and use of records on them and their children and that they might generally be trusting of organisations such as government departments and local councils etc. So what did we find?

Only half the parents said they had heard about data linkage and how it worked. Less than half thought it acceptable to use it to improve the planning and delivery of family support services. Far fewer (around 15 percent) thought it should be used to identify specific families who might need intervention but hadn’t asked for support or to save public money by preventing or catching family problems early. 

Their concerns included: families’ right to privacy; increasing stigma; oversimplification of risk factors; discouraging families from seeking help and problems with data accuracy and safety. About 1 in 5 did agree that the more we know about families the more the nation’s wellbeing can be improved.

Question of trust

There was little trust in organisations who might link data for the above reasons, but specific distrust of private companies with only 4 parents saying they would definitely trust them and 309 saying they wouldn’t. One participant said:

“Having algorithms produced by private companies, who are not transparent, making dubious links, which do correlate with truth, is a very dangerous tool. It will not benefit society but will only benefit private companies.” 

Parents were almost entirely against government accessing financial details such as bank details, credit cards, supermarket records, CCTV and social media posts as the following comments from participants show:

“More detailed and personal information, PARTICULARLY medical records/social services reports/DLA info, should not be ‘joined up’ as this breaches personal privacy.”  

“It might be acceptable to link to credit records and food shopping records on an anonymous basis to produce aggregate information or statistics for research purposes e.g. a study looking at the possible relationships between children’s diets and school attainment, or the impact of debt on parents BUT this sort of data analysis should NEVER identify individuals.”

“Government surveillance of families, without knowledge or consent, is an extremely questionable approach. Government should focus on supporting families, providing public services, creating jobs, ensuring quality of housing, eliminating poverty and increasing community capacities of resilience, care, safety, cohesion and fun.”

Lack of acceptance

So among this group of parents, where we might have expected greater levels of support for the idea of linking data for the purposes of identifying and targeting service intervention, we find in fact a substantial lack of acceptance and trust around the idea of family data linkage.  

A web-based survey of this nature gives us some indication of what people are thinking, but it’s important to try to look at this more carefully. As part of our new research project, we’re commissioning a robustly-designed and -conducted survey of around 900 parents and carrying out a range of in-depth interviews with parents in families most likely to be the target of this type of data linkage and policies associated with it.

• Pilot survey findings