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Ill communication delays NHS England's GP data grab for six months

Poorly publicised medical records plan kicked into autumn

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Despite little political appetite to attack the government's plans to share GP medical records - and with data already held by NHS England - the scheme has been delayed, after doctors expressed concerns about a lack of public awareness.

Tim Kelsey, NHS England's national director for patients and information, insisted this morning that the decision to wait until the autumn before proceeding with the so-called care.data extraction programme did not mean that it had been mothballed.

"There's no question the scheme is going to happen in the autumn," he said, speaking on the BBC Radio 4's Today programme.

"We are not abandoning anything. this is about extending the public awareness campaign. It's definitely happening."

Kelsey said the data grab was "too important" to scrap and added that it was "fundamental" to the future of England's health service.

In a statement, the NHS exec said he had agreed, following uproar about a lack of publicity around the scheme, that patients needed "more time to learn about the benefits of sharing information and their right to object to their information being shared."

However, it remains unclear about how Kelsey's team will now proceed with its much-criticised campaign.

The government paid £1m to carelessly tuck leaflets about the GP medical records' data grab in with junk mail that was posted to 26.5 million households across England in January.

But many patients have said they never received the flyers, while some of those who did said they found the information inadequate and were disappointed not to find an opt out form to fill in and simply hand into their GP practice.

Kelsey failed this morning to explain how his campaign might be improved, however.

He declined, for example, to commit to any promise that subsequent mailouts - if they actually happen - would be individually addressed to patients.

The government, of course, would have to stump up more cash to fund any such campaign.

MedConfidential's Phil Booth, who has battled tirelessly with NHS England to get it to be much more upfront with patients about its data grab plans, said:

Finally, officials at NHS England have seen reason. To upload millions of patients’ confidential data without providing full and proper information or seeking consent would have been the largest breach of confidence in NHS history.

It still could be, if NHS England does not now write to each patient in England individually by name, explaining the risks it has acknowledged as well as the claimed benefits. And this time they’d better not forget to include an opt out form.

This delay will mean nothing if the care.data programme is not overhauled to provide patients with a clear and constantly updated picture of exactly who will have access to their data, why and what for. The entire scheme could do with a radical dose of transparency.

Professor Nigel Mathers, who is the honorary secretary of the Royal College of General Practitioners said he welcomed the "pause".

The extra time will provide it with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people’s data.

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