NHS England delays share of personal data By Jane Fae

19 February 2014 — OurNHS

Mounting criticism and legal challenges force 6 month pause in system that would allow sale of GP medical records.

As criticism of the controversial care.data scheme reached a crescendo last night, and with at least two possible legal challenges now under way, NHS England finally gave in to critics, announcing a further six month pause to the project – and yet more money to be spent on publicity campaigns.

Meanwhile speculation is growing over the future of the individual most closely associated with this project, NHS IT Director, Tim Kelsey.

Two days of crisis talks between NHS England and The British Medical Association (BMA) culminated with announcement of a six-month moratorium. This will allow the government to put out publicity explaining the scheme further and ensure people are aware of their right to opt out.

As the Telegraph reports, the decision follows mounting criticism by patient groups, privacy campaigners, doctors and the Information Commissioner. Not just of the proposed scheme, but of NHS England’s lacklustre efforts to communicate details to patients and practitioners.

However it is likely that legal pressure played a part. Two weeks ago, West Midlands MP Roger Godsiff made a formal complaint to the Information Commissioner’s over the ongoing public information campaign.

On Monday, just 24 hours before the pause was agreed, patient privacy group medConfidential began legal action against care.data, alleging claims made in the official information leaflet that patients could “change [their] mind at any time” were inaccurate and misleading.

The freeze is doubly embarrassing for NHS England since it represents the second such delay in twelve months – and for exactly the same reason, a failure to provide clear information about care.data..

Plans to begin implementing care.data last summer were postponed following warnings from the Information Commissioner. NHS England spent almost £2million putting out leaflets to improve patient awareness of the scheme.

However they ignored advice from theirs own Independent Advisory Group, chosing to communicate with patients only in general terms about use of data – and not to provide an opt-out option.

The outcome – a total failure to communicate – was all too predictable. 

Just two weeks ago Tim Kelsey admitted on Radio 4 that: “maybe we haven’t been clear enough about the opt-out”.

A poll conducted for the Medical Protection Society last week revealed that 67% of over 1400 respondents from England say they have not received the leaflet …explaining the new care.data system”.

A YouGov poll of 1,100 adults commissioned by advocacy group SumOfUs.org suggested that 65 per cent of the public oppose the plans.

Responding to yesterday’s announcement Mr Kelsey said: “NHS England exists for patients and we are determined to listen to what they tell us. We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months.”

Anna Bradley, Chair of Healthwatch England who had called for such a delay, called it a “really positive move by NHS England”, adding “They have shown a willingness to listen to what the public have to say about the way their health and care services are run.

However Phil Booth of MedConfidential was unconvinced. He told us: “This is not the first major delay to the care.data scheme brought on as a direct result of NHS England – and Mr Kelsey – failing to listen to patients.” 

He went on: “medConfidential has been saying that care.data needs a radical rethink since details were first made public. We still are.

“But the real issue appears to be the ideology that has taken over NHS England. For a year it has been the same old story: NHS England officials assuring the public that their concerns were being listened to, while demonstrating through their actions – always too little, too late, that the truth was quite the opposite.

“Mr Kelsey’s statement today suggests he really hasn’t learnt. By suggesting the only issue here is that patients have not fully grasped the benefits of his initiative he shows he still hasn’t understood the fundamental need for confidence in the patient-doctor relationship and across the NHS as a whole.

“If he hasn’t learnt, perhaps it is time for NHS England to employ someone who will”.

Long-term critic of the care.data programme David Davis MP told us: “The Government has done exactly the right thing in postponing the NHS database for 6 months. Both the design and implementation of this database have been very poorly thought through.

He added: “There is no doubt that a central database would have some significant medical value. However it does not need to be anything like as big as what is being proposed. Furthermore since it involves breaking doctor patient confidentiality, it should only be done with the explicit approval of the individuals concerned. 

He concluded: “Finally this data should only be accessible to licensed research teams on a controlled basis, and misuse of the data should be subject to criminal penalties.”

Last night’s announcement means that patients now have until September to decide whether they want to opt out of the national scheme.

According to NHS England, they will be using the additional lead time to widen understanding of the benefits of care.data, as well as communicate information about safeguards and the opt-out process. 

They will also be working with a small number of GP practices on a voluntary basis to test the quality of the data.

A Department of Health spokesperson added: “This is an NHS England decision which we support. This is a vital programme which will bring real benefits to patients. But concerns over how this has been explained to patients have been raised which must be addressed.”

About the author

Jane Fae is journalist and campaigner on IT, the law and sexuality. She writes extensively on  individual privacy in the face of creeping state intrusion, for Register (the leading IT industry website), the Guardian and the Independent.

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