Your life in their hands: is the care.data NHS database a healthy step or a gross invasion of patient privacy?

Under the heading “Better information means better care”, this innocuous piece of paper will outline one of the biggest transformations of the way the NHS handles our confidential data for decades.

From spring this year, every GP surgery in England must begin sending patient information to a central NHS database.

The data trawl, which has been given the equally innocuous title care.data, is being hailed as a revolution in the use of information to plan and improve our healthcare – a project which has been personally spearheaded by Health Secretary Jeremy Hunt.

But it has also been condemned as a government-backed intrusion into our privacy on an unprecedented scale.

For the first time, information about the private things we discuss with our GP will be –  with some exceptions – held in a national database, alongside our NHS number, date of birth, postcode and gender.

Even more worryingly for some campaigners, the data may in future be made available to non-NHS researchers including private health companies – albeit in a “pseudonymised” format.

As it says on the front of the information leaflets, which will be sent to every household in England in January, “you have a choice” about whether to allow your data to leave the GP surgery, but some experts believe that, despite the public information campaign, too many patients are still in the dark about the ramifications of the scheme.

This is partly because the project is very complex, and has been beset by confusion, delays and misinformation.

GP surgeries were originally told last summer that data extracts would begin within weeks, and it was their responsibility to tell their patients about it.

Amid a widespread outcry that GPs would never be able to inform all their patients in time, the project launch was delayed and the publicity campaign planned.

The organisation at the heart of the project, the Health and Social Care Information Centre (HSCIC), was created in 2013 during the Government’s health reforms as the central hub of a data revolution in the NHS.

Described as a body at “arms-length” from government, the HSCIC already collects detailed information about hospital care.

But there is a chronic shortage of good information about the health conditions and complaints that GPs see, according to one of the men leading the care.data project.

Source The Independent