National Data Guardian report finds that as many as a third of population lack trust in government use of data

A survey conducted by the independent watchdog for healthcare data has found widespread public acceptance for increased information-sharing during the coronavirus crisis – but a belief that, once the pandemic is over, practices should return to normal.

The Office of the National Data Guardian for Health and Social Care – a government arm’s-length body to provide guidance on NHS use of data – has released the results of a survey of more than 2,000 UK adults, 63% of whom said they are more accepting of the necessity of data-sharing as a result of coronavirus. Among those that work in the health and social care field, this figure was 73%.

Some 56% said they have learned more about the use of data recently, while four in five respondents agreed that, during a health crisis, it is important that data is shared across all parties involved in the response.

But 71% of citizens would like to know more about how data is currently being used and 70% said that, after the pandemic, data-sharing rules should return to what they were before. Only 7% disagreed with this proposal.

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And less than two thirds – 64% – of the population said that they would trust the government to use their personal data, including coronavirus test results. Some 17% indicated that they would not, and 19% were not sure. 

Dame Fiona Caldicott, the National Data Guardian, said: “By building people’s understanding about how their health and care data can be used safely and appropriately for their own individual benefit and for the wider public good, we build public trust for the use of that data. During the pandemic we have seen members of the public taking a more active part in discussions that were formerly the domain of experts – such as how data can be used to track disease spread, show us who is most at risk and reveal what treatment is effective. People have been able to see the immediate relevance and need for data to be used.”

She added: “This is encouraging but we should remember that trust is hard-won and easily lost. It is essential that clear reasons and explanations are given to the public if their data is to be used. Appropriate safeguards must be in place to protect confidentiality and data security. In the first few months of the pandemic, I was pleased to see emergency measures put into place to ensure data could be used when and where it was needed. As we move into the next phase, it will be important to examine which of these needs to continue and what needs changing. By doing this openly and transparently, we can build on what we are seeing about the readiness for people to allow their data to be used in ways that benefit themselves, their families and others both now and in the future.”

The role of National Data Guardian was recently advertised, with applications for a successor to Caldicott closing last month.