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.

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Are you happy for big business to have your confidential medical records?

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Do you live in England? Are you an NHS patient? Have you realised that your Conservative-led Coalition government is selling your medical records to private healthcare and pharmaceutical companies? Do you know that these ‘anonymised’ records are in fact nothing of the sort, and anyone buying your details will be able to identify you?

Do you want to do something about it? It isn’t too late.

Vox Political warned last September that Health Secretary Jeremy Hunt is planning to sell records to “approved” private companies and also universities – that’s sell, mark you, to make money for the government.

The system was called the General Patient Extraction Service (GPES) – although exactly who it serves is entirely up for debate. It seems to have metamorphosed into the Health and Social Care Information Centre by now, but the purpose remains the same. You may also see it described as the care.data scheme.

Hunt wants us to believe that the information will be valuable for medical research and screening for common diseases.

In fact, the information could be used by private health companies as evidence of failures by the National Health Service, and could help those companies undercut NHS bids to continue running those services – this would accelerate the privatisation that nobody wanted.

This week, The Independent reminded us all that the system that will sell off your information will go live later this year.

The article warned: “Companies like Bupa or Virgin that already hold data on UK patients may be able to use the new anonymous data available from the centre to precisely identify where it has come from, according to campaigners.

Phil Booth, co-ordinator at patient pressure group medConfidential, said: “The scheme is deliberately designed so that ‘pseudonymised’ data – information that can be re-identified by anyone who already holds information about you – can be passed on to ‘customers’ of the information centre, with no independent scrutiny and without even notifying patients. It’s a disaster just waiting to happen.”

The information for sale to profit-making firms will contain NHS numbers, date of birth, postcode, ethnicity and gender.

Patients can opt out of the system by contacting their family doctor, but medConfidential has designed a form to make it easier.

On its ‘How to opt out’ page, the organisation writes: “Under changes to legislation, your GP can now be required to upload personal and identifiable information from the medical record of every patient in England to central servers at the Health and Social Care Information Centre. Once this information leaves your GP practice, your doctor will no longer be in control of what data is passed on or to whom.

“This information will include diagnoses, investigations, treatments and referrals as well as other things you may have shared with your doctor including your weight, alcohol consumption, smoking and family history. Each piece of information will be identifiable as it will be uploaded with your NHS number, date of birth, post code, gender and ethnicity.

“NHS England – the body now in charge of commissioning primary care services across England – will manage and use the information extracted by the Health and Social Care Information Centre for a range of purposes, none of which are to do with your direct medical care. Though the official leaflets talk a great deal about research, these ‘secondary uses’ for which your data may be used include patient-level tracking and monitoring, audit, business planning and contract management.

“In September 2013, NHS England applied to pass on your information in a form it admits “could be considered identifiable if published” to a whole range of organisations that include – but are not limited to – research bodies, universities, think tanks, “information intermediaries”, charities and private companies.

“Though you may be told that any data passed on will be ‘anonymised’, no guarantees can be given as to future re-identification – indeed information is to be treated so that it can be linked to other data at patient level – and NHS England has already been given legal exemptions to pass identifiable data across a range of regional processing centres, local area teams and commissioning bodies that came into force on April 1st 2013. The Health and Social Care Information Centre already provides access to patient data, some in identifiable form, to a range of ‘customers’ outside the NHS, including private companies.”

The opt-out form is downloadable from the medConfidential web page, along with a form letter in various formats, allowing patients to opt out themselves, their children and any adults for whom they are responsible.

This is a gross abuse of patient confidentiality for the purpose of commercial gain.

Don’t let it happen to you.

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