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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Let’s support people who stand up against bad government

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A principled stand: Dr Gordon Gancz, of Oxford, is fighting the government’s plan to sell his patients’ confidential records to private companies for profit.

A refreshing change seems to be sweeping through local news media here in the UK, with stories starting to appear about people who are fighting unjust behaviour by the government.

The rest of us should support this.

For example: Workington woman Jeanette Johnston, 29, had a job until recently but has been forced to give it up due to congenital health problems which mean she has already had a kidney removed and will need a heart and lung transplant in the future.

She had been receiving Disability Living Allowance but this was stopped last August after aids including bed ladders were fitted at her home, following recommendations from an occupational health expert.

DWP advisors told her that the benefits would stop until she was reassessed for the Personal Independence Payment (PIP) – and she has now spent half a year waiting for that appointment.

Jeanette’s tale raises several questions. Why does it take so long for anyone to have the now-legally-demanded medical assessment of their disabilities? Could it be because benefits are stopped until those assessments take place, and it is a chance for the government to claim benefit savings? This seems extremely likely.

Also, Jeanette’s benefit was stopped after living aids were installed in her home on the advice of an occupational health expert. The government has just announced a plan to let employers send occupational health experts to advise workers who are off sick for more than four weeks. Does this signify an intention to deprive people of sickness benefits?

Finally, we should note that Jeanette’s condition is serious, involving a heart condition – and it is entirely possible that the stress of trying to make ends meet could worsen her health enough to hospitalise her or even end her life. Is this the government’s intention? If so, then we should all be asking questions about criminal intent.

Elsewhere – in Oxford – a local doctor is defying plans to collect patients’ confidential information and sell it to businesses.

Vox Political has reported on the plan many times in the past, focusing on patients’ right to ‘opt out’ of the scheme, called variously the Health and Social Care Information Centre, the General Patient Extraction Service or simply care.data by the government.

The records are said to be ‘pseudonymised’ by the government – an attempt at hiding patients’ identities that, in fact, allows anyone buying the information to work out the personal details of everybody on the list if they so choose.

Oxford GP Dr Gordon Gancz said: “It removes my right to protect my patients’ confidential information.” He has vowed to take the government to court if it takes action against him.

Both of these stories have been reported in the local press, where the online versions have ‘comment’ columns to which readers can post opinions. It seems likely that the papers involved will also have letters pages.

If you believe that the delays caused by the government disability assessment system are dangerous, you can say so – directly, to the newspaper. If you believe that Dr Gancz is right to protect his patients, you can say so – directly, to the newspaper.

I’m not going to urge you to go and do it because – as we all know – the Department for Work and Pensions took a previous comment of this kind as evidence that I was co-ordinating a campaign of harassment against it (new readers: this is not a joke!) and a future such incident would not help anyone.

But it seems likely that a few words of support for these people, in the pages of their local paper, might help rouse other readers into declaring their own opinions.

It is easy to keep people quiet about controversial changes when they think they are the only ones who are concerned; it’s not so easy when people have evidence that others feel the same way.

What are you going to do?

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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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Hands off my medical records, Jeremy!*

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The two-fingered salute: Jeremy *unt displays his high regard for the NHS patients whose details he wants to steal and sell to private business.

Conservatives. They think they own everything – including your medical records.

If you live in England, Jeremy ‘The Misprint’ *unt wants your doctor to send your confidential patient record to a national database, from which it will be sold on – sold on to make money for him, mark you – to “approved” private companies and also universities.

The system is called the General Patient Extraction Service (GPES) – although exactly who it serves is entirely up for debate. You may also see it described as the care.data scheme.

He thinks this gross abuse of patient confidentiality is a good idea. But then, he’s a Tory and therefore thinks he has a God-given right to take anything, from anyone, if they have less filthy lucre than himself.

According to the Daily Mail – and you know the Tories have lost the plot when even the Heil weighs in against them – the *unt wants us to believe that the information will be valuable for medical research and screening for common diseases.

And an NHS England spokesman told the paper, “The programme will provide vital information to approved organisations about the quality of health services.”

Oh really?

So in fact this information could be used by private health companies as evidence of failures by the National, publicly-funded, service, yes?

How would it help in screening for common diseases? This information becomes freely available without any data having to be sold – how else would we know when an epidemic breaks out?

And how is this valuable for medical research – beyond the possibility that the now-infamous ‘job offer’ for people to take part in human medical experimentation may be targeted at particular individuals, according to medical records that they thought were only available to their own, trusted GP?

Doctors say Mr *unt and NHS England have failed in their duty to publicise the plan in a proper and reasonable way, that patients are not getting an “informed” choice about the matter, and that patients could be identified from the data with any information other than that on common conditions – which, we’ve already established, becomes public knowledge anyway.

Some Local Medical Committees (LMCs) are already discussing whether to opt out of the system – and this blog would urge all the others to do the same.

If you are concerned about this gross invasion of your privacy, you can contact your own LMC and request that they opt out. Contact details can be found on the British Medical Association’s website here.

*In fact he won’t be able to get his filthy hands on them anyway because I live in Wales. The title is for effect.