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Mass NHS data sharing plan will not allow ‘simple opt out’ despite ministers’ pledges

This article was taken from: http://www.telegraph.co.uk/news/2017/09/19/mass-nhs-data-sharing-plan-will-not-allow-simple-opt-despite2/

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A controversial NHS data-sharing plan will not allow patients a “simple opt-out” despite ministers’ pledges, leaked documents suggest.

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

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 swathes of the NHS – 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” engenderd 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 NHS chief information officer Will Smart.

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.

Why is the NHS under so much pressure?

An ageing population. There are one million more people over the age of 65 than five years ago

Cuts to budgets for social care. While the NHS budget has been protected, social services for home helps and other care have fallen by 11 per cent in five years

This has caused record levels of bedblocking, meaning elderly people with no medical need to be in hospital are stuck there. Latest quarterly show occupancy rates are the highest they have ever been at this stage of the year, while days lost to bedblocking are up by one third in a year

Meanwhile rising numbers of patients are turning up in A&E – around four million more in the last decade, partly fuelled by the ageing population

Shortages of GPs mean waiting times to see a doctor have got longer, and many argue that access to doctors since a 2004 contract removed responsibility for out of hours care

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.”

He said: “This reveals the hidden agenda that NHS England has been working on in spite of all the promises.

“This has been going on in secret for too long and the public needs to know what they are planning.”

“They ditched care.data when it got too controversial – but this is just Care.data 2,” he said.

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

The final report is expected to go to ministers in the autumn.

If will need to be approved by the NHS England Digital Delivery Board ahead of that.

An NHS England spokesman said: “Good clinical decisions require good information, and the better the information, the better the care.

“However patient  information would only be fully identifiable for individual care so clinicians, nurses and healthcare professionals can access the information they need to deliver the best care possible to that patient.”