National Data Guardian poll reveals growing understanding of data sharing

A poll carried out by the National Data Guardian for Health and Social Care (NDG) has shown a growing public understanding that data is vital for tackling the Covid-19 coronavirus pandemic.

Nearly two thirds (63%) of the 2,114 respondents said the pandemic has made them more accepting of the need for sharing health and care data. Furthermore, around eight in ten people (78%) agreed that during a public health emergency such as coronavirus, it is more important than usual that health and care data is shared with all involved in the emergency response.

However, 71% said they would like to know more about how information about them can be used to tackle the coronavirus pandemic.

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.

“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.”

As well as questions on information sharing during an emergency, respondents were also asked about post-Covid.

Seven in ten people (70%) said data sharing rules should return to what they were before, with 60% agreeing that after the pandemic organisations such as local authorities, university and hospital researchers, and private companies should be allowed to carry on using health and care data to improve care for all people, not just coronavirus patients.

Dame Caldicott added: “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 power of data in a pandemic was the subject of an episode of the Unplugged podcast. The panel looked at why access to data is important and whether the pandemic has permanently changed the country’s relationship with data.