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NHS Care.data on hold for six months

18/02/14

The controversial NHS database to share data extracted from GP medical records is in trouble after it was suddenly delayed for six months.

NHS England today bowed to growing pressure by putting back from April to the autumn the collection of data from surgeries- admitting more time was needed to convince patients.

In the meantime, NHS England said will work to:

* Strengthen understanding of the "safeguards in place" and of "how people can opt out if they choose to", working with the British Medical Association (BMA), the Royal College of General Practitioners (RCGP) and Healthwatch.

* Examine further measures to "build public confidence", focusing on the medical benefits from sharing information.

* Test the quality of the data, working on a voluntary basis with a "small number of GP practices".

The surprise delay follows widespread criticism that the public have been "left in the dark" over the plans and have not received the leaflets explaining the project.

Ministers and health experts say the database - care.data - is needed to improve medical research and identify poor NHS care more quickly.

But critics have leapt on ministers' announcements that records - albeit, anonymised - can also be sold to private health companies and drug manufacturers. And there are fears that creating an enormous database will inevitably lead to sensitive medical information falling into the wrong hands.

Announcing the delay, Tim Kelsey, national director at NHS England, said: "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."

The move was welcomed by Anna Bradley, of Healthwatch England, who said: "This is a really positive move by NHS England. They have shown a willingness to listen to what the public have to say about the way their health and care services are run."

Nevertheless, NHS England robustly defended the principles behind Care.data - and insisted the health service had "some of the best data systems in the world".

It pointed out that information about hospital admissions has been collected since the 1980s, with data since added about outpatient appointments, A&E visits and mental health care.

A statement read: "However, we are still missing information about most of the care provided outside hospital including GP, out-of-hours, and district nursing services. As a result, we know little about the safety of care outside hospital and about how well all the different parts of the NHS are working together to provide high quality, joined-up care for patients

"The purpose of the care.data programme is to bring together this missing information for the benefit of us all."

The British Medical Association welcomed the announcement. Dr Chaand Nagpaul, chair of the BMA's GP committee, said: "With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed about the implications of care.data. While the BMA is supportive of using anonymised data to plan and improve the quality of NHS care for patients, this must only be done with the support and consent of the public, and it is only right that they fully understand what the proposals mean to them and what their rights are if they do not wish their data to be extracted."

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