We asked people whether what they have learned during the pandemic has made them more accepting of the need for sharing health and care data. Nearly two thirds (63%) agreed and among health and care workers this was 73%.
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 those involved in the emergency response. When asked if they would like to know more about how information about them can be used to tackle the coronavirus pandemic, 71% of respondents said they would. Among people working in health and care, 81% would like more information.
A majority (64%) said that they would trust government agencies to use information about them such as coronavirus test results. However, a further 17% did not agree with this and 19% were not sure, showing that it is essential that there is an ongoing focus to build public trust in the use of their information to manage the pandemic.
Looking ahead to how data sharing should take place after the pandemic, seven in ten people (70%) said that, data sharing rules should return to what they were before, with around just one in twenty (7%) disagreeing with his and 23% neither agreeing or disagreeing. At the same time 60% agree 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 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 the 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.”