NHS plans to share data despite opt-outs

Patients who want to opt out of an NHS data-sharing plan could still have their records shared, leaked documents show. Last year the Government cancelled proposals for a national care. data scheme after it was criticised for failing to make it clear how to opt out. However, draft plans seen by The Daily Telegraph suggest that patients who opt out will still have their data shared over services covering up to five million people.

PATIENTS who want to opt out of a controversial NHS data-sharing plan could still see their records shared among swathes of the health service, leaked documents show.

Last year the Government axed proposals for a national care.data scheme after it was criticised by privacy campaigners for failing to give the public a clear route to opt out.

The plans had become mired in scandal after it was found that existing NHS data was already being sold to the insurance industry.

Last year ministers said the scheme would be scrapped. They promised that new plans would allow every patient a “single and simple” way to opt out if they did not want their medical information shared beyond their “direct care”.

However, NHS draft plans seen by The Daily Telegraph suggest that in fact, patients who opt out will still see their information shared across services covering up to five million people.

Privacy campaigners said the documents suggested health officials have “learned nothing from the collapse in public trust” engendered by the care. data fiasco. The head of that scheme, Tim Kelsey, who had been criticised for lavish expenses, including £21,000 a year on hotels, resigned amid the controversy, with the new plans led by Will Smart, NHS chief information officer.

The draft NHS document, drawn up in July, acknowledges that patients are “less willing to share their data when the direct benefit for them and their local population is unclear”.

But it suggests that a “trusted relationship” can be built between a patient and an NHS health system covering up to five million people, with records shared across the sector, regardless of consent.

“Sensitive personal and confidential data (which is fully identifiable) will almost certainly be required to achieve interoperability and to facilitate precision medicine and case finding. The NDG [National Data Guardian] Review opt-out will not apply,” the document states.

Those who only want their records seen by the services treating them would instead have to make special objections, the document on “connecting care settings” states.

Phil Booth, from privacy campaigners medconfidential, said: “We hope Jeremy Hunt sees this proposal for the omnishambles that it is, and tells NHS England to keep his promise to patients that data will be not be used against their wishes. This has been going on in secret for too long and the public needs to know what they are planning.”

NHS England said such information would be anonymised before it was used for any service planning, or to benchmark the quality of services.

 NHS hospital chiefs have been hauled in by Jeremy Hunt, the Health Secretary, over poor performance, in a bid to head off an A&E crisis following warnings that the NHS could be facing the worst flu season in its history.

Two chief executives have just been forced out, with around 60 more ordered to a mandatory all-day meeting yesterday, where they were warned to make urgent improvements.

Mr Hunt and senior NHS officials made plain their frustration that long waiting times have become “normalised” long before winter sets in.