There is “considerable” public support for sharing anonymised health data with third parties, according to the unpublished findings of national data guardian Dame Fiona Caldicott.
Dame Fiona was commissioned last September by health secretary Jeremy Hunt to propose a set of data security standards for health and social care organisations, and advise on the wording of a new consent and opt-out model for sharing patient information.
Her recommendations were originally expected to be published in February, but this has been delayed until after the EU referendum on 23 June, Dame Fiona revealed on Wednesday.
Speaking at the UK e-Health Week conference in London, she said her research had found “considerable” public support for the use of patients’ anonymised information, despite low levels of understanding about data use and sharing.
Dame Fiona said: “Most people do trust the NHS to do the right thing with their data, but they want to know what it is going to be used for, and what the benefits will be.”
Assuring the public over compliance with data security standards was something that “boards of organisations [and] leaders of care must take responsibility and accountability for”, she said.
Boards routinely discuss finance and quality standards but “in the past they haven’t necessarily looked at the standards that are being achieved in terms of the security of information and how it’s used”.
This needed to change, she added, “to show this is just as important in terms of delivering the best possible patient care with effective use of public money as the other things that we have to attend to”.
At last year’s HSJ lecture, Mr Hunt said the NHS had “not yet won the public’s trust that it is competent in protecting basic information”, but that Dame Fiona’s guidelines and a Care Quality Commision review into data security “will be absolutely vital” to winning people over.
Another strong message from Dame Fiona’s review was that the data standards and the wording of the opt-out model needed to be clear and simple.
She wants the Department of Health to consult with the public after her proposals are published in the summer.
Her comments coincided with the publication of NHS Digital data showing the proportion of patients who have chosen to opt out of sharing their data for purposes other than direct care.
Only 2.2 per cent of patients registered at clinical commissioning groups in England have opted out, according to the figures released by NHS Digital, the new name for the Health and Social Care Information Centre.
The data shows that most CCGs have an opt-out rate of 0-5 per cent, but it was as high as 13.3 per cent at Oldham, 8.9 per cent at Blackpool, 7.7 per cent at Camden and 6.6 per cent at Wirral.
However, the opt-out will only be implemented from 29 April, a date set by the health secretary.