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Survey shows public support data sharing in health emergency

16/10/20

Mark Say Managing Editor

A majority of the public in England are in favour of health and care data being shared to support the response to an emergency such as the coronavirus pandemic, according to a newly published survey.

The National Data Guardian (NDG) for Health and Care has published the results of a poll it commissioned from research firm Kantar, questioning 2,144 adults between 30 July and 6 August.

It revealed that 78% agreed that 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.

A majority of 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.

There had also been a small reduction since a poll in February in people’s level of public trust in how public bodies use their data. The proportion saying they trusted the NHS fell from 59% to 57% and for local authorities went from 36% to 32%.

Opt out question

Another significant finding was that, when told about the national data opt-out service, which allows patients to opt out of their confidential information being used for research and planning, 25% said they were likely to do so, just 1% below the figure in February.

Fional Caldicott

National Data Guardian Dame Fiona Caldicott (pictured) said: “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.

“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.”

Post-pandemic preference

Looking ahead to how data sharing should take place after the pandemic, 70% of the survey respondents said the rules should return to what they were before, with only 7% disagreeing and 23% being neutral.

At the same time 60% agreed that after the pandemic, organisations such as local authorities, universities, 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.

Image from nhs.uk, Open Government Licence v3.0

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