Stalled – the plan to share NHS patients’ confidential information with big business

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Freudian slip: The BBC’s article on the care.data delay was accompanied by this picture of a hand drawing on a diagram of a pair of breasts. Is this a tacit implication that the Department of Health has boobed? (Sorry, ladies) [Image: BBC]

A plan to sell the confidential medical information of every NHS patient in England has been put on hold after it caused a public outcry.

The care.data system, also called variously the General Patient Extraction Service (GPES) or the Health and Social Care Information Centre, was dreamed up as a money-spinning device by Jeremy Hunt’s Department of Health.

The aim is that, if you are an NHS patient in England, your GP will be forced to provide your confidential records, showing every medical condition you have ever had and providing intimate details of your current state of health, to a huge national database.

From there, your information may be sold on to private healthcare and pharmaceutical companies for “research”. A new proposal backed by NHS England (a body set up largely to support the increasing privatisation of the NHS, if my information is correct) would give non-NHS bodies including private companies the right to ask for access to the data.

The government has said the information would be “pseudonymised”, in an attempt to reassure you that you cannot be identified from the information to be provided to outside organisations. This is not true, and in fact it will be entirely possible to trace your medical information back to you.

The government claims the information will help experts assess diseases, examine the effects of new drugs and identify infection outbreaks, while also monitoring the performance of the NHS.

In fact, it seems far more likely that this is a widespread invasion of privacy, with the information likely to be used (for example) to sell you health insurance that you should not need.

We are told that NHS England organised a mass mailing to every household in England, explaining its version of what the planned system will do – but a BBC poll of 860 people last week found that fewer than one-third of them could recall receiving it.

Concern that people are likely to end up allowing their information to go into commercial hands without ever knowing about it has led to the scheme being halted – for the time being.

NHS England has accepted that its communications campaign must be “improved”, although we do not yet know how. A propaganda campaign on TV and radio seems likely.

Every NHS patient in England has the right to opt out of the data sharing scheme, and many have already chosen to do so. You can do it right now, using a form designed by the medConfidential website.

While NHS England and the Department of Health will continue trying to justify this scheme, there is no justification for selling your private information to commercial organisations.

It is to be hoped that this six-month pause will end with the abandonment of the scheme.

If the organisations that want the information genuinely intend to use it for humanitarian concerns, it would be fully anonymised and they would not be buying it.

Follow me on Twitter: @MidWalesMike

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