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NHS data project delayed in England

Public needs more time to learn about medical records database
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NHS England has agreed to delay the start of its care.data information-sharing initiative by six months after medical and patient groups argued it was being rolled out too quickly.

The project - which aims to create a nationwide database of anonymised medical records to help monitor and raise healthcare standards across the country - was due to launch in April but has now been delayed until the autumn.

In a statement, NHS England said it had heard from many sources that "patients need more time to learn about information sharing, the benefits and their right to object."

It has conceded that it needs to do more to communicate the benefits of having joined-up access to patient-level data and said it will work with organisations such as the British Medical Association (BMA), Royal College of General Practitioners (RCGP) and consumer group Healthwatch to "develop additional practical steps to promote awareness with patients and the public."

While the main roll-out has been delayed, data will start to be collected shortly from a small number of GP surgeries - on a voluntary basis - to test the quality of the information received.

The move was well-received, with Healthwatch England chair Anna Bradley applauding NHS England for showing "a willingness to listen to what the public have to say about the way their health and care services are run".

Echoing that sentiment, RCGP honorary secretary Prof Nigel Mathers said the delay will provide the NHS "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".

Few would argue that a joined-up view of health standards and care practices across England can be anything but positive over time, and UK government has policy has zeroed in on information-sharing in the wake of incidents such as the patient care failings at Stafford Hospital, which is slated for closure by the end of this year.

Care.data will allow prompt action to be taken when standards drop, according to NHS England, and will also make it easier to understand what happens to people with chronic health conditions who are treated outside the hospital setting.

For the pharma industry's perspective the initiative could in theory at least also provide useful information to support medical research, help recruit patients into trials and potentially speed up the development of new drugs.

"NHS England exists for patients and we are determined to listen to what they tell us," said Tim Kelsey, national director for patients and information at the organisation.

"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."

Article by
Phil Taylor

19th February 2014

From: Research, Healthcare

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