Under the £50 million ‘care.data' plan, from April onwards the electronic patient records in every GP practice in England were due to be gathered and then merged with data from hospitals, social care and community services to create a single anonymised database that could be accessed by researchers from academia and pharmaceutical companies.
But earlier this week the ICO accused NHS officials of failing to explain the new scheme in the way they promised to, while the BMA said it was “deeply concerned” that patients had not been properly told how they can opt-out of the new ‘Big Brother' database'. In response, NHS England has postponed the scheme for six months.
The row came over the way the scheme was communicated to people, in particular the fact that anyone can opt out of sharing their health data. Despite explanatory leaflets being sent to all 22 million households in England last month, surveys showed that around two-thirds of people did not recall seeing them.
As a result, NHS England has said it will now carry out a publicity campaign to explain the scheme and ensure people are aware of their right to opt out.
This directly addresses the concerns raised by the ICO, which had launched an investigation into how the opt-out rights had been explained.
Earlier this week an ICO spokesperson told SCMagazineUK.com: “We were shown the communications plan for this. But we don't feel it's been implemented necessarily in the way that we expected. The NHS themselves have introduced an opt-out – it's not an opt-out under the Data Protection Act – but even so they're still obliged to let people know about it, and that's what we're looking at. Our role is to see whether patients are being made aware of what's happening to their records and the fact that they can opt out if they want to. We feel that the opt-out itself has not been explained as clearly as we were told it would be by NHS officials.”
Privacy campaigner Nick Pickles, director of Big Brother Watch, who had supported the calls for the scheme to be delayed, told SCMagazineUK.com that people can opt out by visiting the website https://www.faxyourgp.com/.
But the new database has been backed by medical charities, who insist that NHS data sharing will save lives. Last month, charities and medical research organisations including Arthritis Research UK, Cancer Research UK, Diabetes UK, the British Heart Foundation and the Wellcome Trust ran a joint advertising campaign urging people not to opt out.
The six-month delay is a further body blow to the care.data programme, after the NHS' own risk analysis showed that the database will be vulnerable to hackers and the insider threat.
Last month, it was also revealed that the opt-out clause could break the forthcoming new EU-wide data privacy law which may insist people must actively ‘opt-in' before their personal data can be used.
This story was updated to reflect the database delay on 19th February.