Normally, discussion pieces leave us with that empty feeling of, ‘yes, but what are you going to DO about it?’.
Well, here’s a piece – the leader piece in today’s online Grauniad – which fills that gap.
Warning over privacy of 50m patient files
Call for boycott of medical database accessible by up to 250,000 NHS staff
What you can do
!!! Immediate, and so unexpected as to be almost missable, is the link to The Proposed Solution.
David Leigh and Rob Evans
Wednesday November 1, 2006
The Guardian
Millions of personal medical records are to be uploaded regardless of patients’ wishes to a central national database from where information can be made available to police and security services, the Guardian has learned.Details of mental illnesses, abortions, pregnancy, HIV status, drug-taking, or alcoholism may also be included, and there are no laws to prevent DNA profiles being added.
DNA records are not taken as part of any normal health service process. They are part of criminal records. Genetic screening for health problems is still relatively rare. The authors here miss a chance to link up their story with the problems of database-sharing across departments.
The uploading is planned under Whitehall’s bedevilled £12bn scheme to computerise the health service.
Read
Private Eye for some of the best journalism regarding this fiasco. Again, if the government is unable to implement a ‘simple’ database of existing records, what chance does it have with the NIR? And don’t forget, these are our taxes slipping effortlessly into the unimaginably deep pockets of the immoral, inefficient, inept companies more than willing to take advantage of ridiculous public policy.
After two years of confusion and delays, the system will start coming into effect in stages early next year.
No it won’t. There are ‘significant’ delays. One of the major partners was
Accenture. Accenture, who as Arthur Andersen were heavily involved with Enron, have dumped iSoft. That tells you all you need to know!
Though the government says the database will revolutionise management of the NHS, civil liberties critics are calling it “data rape” and are urging Britons to boycott it. The British Medical Association also has reservations. “We believe that the government should get the explicit permission of patients before transferring their information on to the central database,” a spokeswoman said yesterday.
As usual, you won’t even be told this is happening. No letter will drop through the door saying ‘your data is ours, unless you tick this box’. There are no offers of boxes to tick. It will be impossible to remove your data, or to exclude yourself. The only option available will be to restrict NHS staff access. And it seems even this can be overidden at the whim of a suit.
And a Guardian inquiry has found a lack of safeguards against access to the records once they are on the Spine, the computer designed to collect details automatically from doctors and hospitals. The NHS initiative is the world’s biggest civilian IT project. In the scheme, each person’s cradle-to-grave medical records no longer remain in the confidential custody of their GP practice. Instead, up to 50m medical summaries will be loaded on the Spine.The health department’s IT agency has made it clear that the public will not be able to object to information being loaded on to the database: “Patients will have data uploaded … Patients do not have the right to say the information cannot be held.”Once the data is uploaded, the onus is on patients to speak out if they do not want their records seen by other people. If they do object, an on-screen “flag” will be added to their records. But any objection can be overridden “in the public interest”.
What interest ‘the public’ could have in your personal medical data is beyond me.
Harry Cayton, a key ministerial adviser, warned last month of “considerable pressure to obtain access to [the] data from … police and immigration services”, but he is confident that these demands can be resisted by his department.
Here again, the link to other databases and external (non-healthcare) access. These scum will be trawling, data-mining for potential suspects with specific mental health problems, those on certain medications, those with a history of physical injuries… Guilt by data-association.
Another concern is the number of people who can view the data. The health department has issued 250,000 pin-coded smart cards to NHS staff. These will grant varied access from more than 30,000 terminals – greater access for medical staff, and less for receptionists. Health managers, council social workers, private medical firms, ambulance staff, and commercial researchers will also be able to see varying levels of information. Officials say the data will be shared only on a need-to-know basis. But Guardian inquiries show a lack of safeguards.
We have already published numerous posts on how any system like this can be subverted. These cards can be cloned, data can be sold to, for example, insurance companies. You will be black-balled from credit, mortgages, insurance, travel, job applications…
Although data protection laws supposedly ban unnecessary build-ups of computer information, patients will get no right to choose whether their history is put on the Spine. Once uploading has taken place, a government PR blitz will follow. This will be said to bring about “implied consent” to allow others view the data. Those objecting will be told that their medical care could suffer.
Closing the door after the horse has been shot.Your government has no right to even threaten to deny you services which you pay for. It is important to remember this. They are public servants, yet they act like lords berating the serfs. They must be taken down, reminded of their place in society. And you must remind yourself of yours.
The government claims that computerised “sealed envelopes” will allow patients selectively to protect sensitive parts of their uploaded history from being widely accessed. But no such software is yet in existence.
Oh, I’m sure some sort of patient-held gpg key could be implemented should they wish, allowing only the patient to open the file when requested to do so by a valid healthcare professional. But an IT company like iSoft can’t even make a database, let alone this.Besides, this only serves to magnify the ridiculous insecurity of this ill-conceived and awfully executed system.
It is being promised for an unspecified date. Some doctors say “sealed envelopes” may be too complex to be workable. The design also allows NHS staff to “break the seal” under some circumstances. Police will be able to seek data, including on grounds of national security. Government agencies can get at records, according to the health department, if “the interests of the general public are thought to be of greater importance than your confidentiality”. Examples given of such cases include “serious crime and national security”.The department’s guidelines say: “The definition of serious crime is not entirely clear … Serious harm to the security of the state or to public order, and crimes that involve substantial financial gain or loss will … generally fall within this category.” The health department says confidentiality can already be breached in such cases.At present, police have to persuade a GP, who knows the patient, to divulge limited facts, or insist on a court order.
This is a good system. It’s not broken. It does not need ‘fixing’.
Under the new system, data may be disclosed centrally and anonymously, at the touch of a button. Health department privacy advisers say they do not wish to allow police to have clinical information. But they are prepared to disclose patients’ addresses.Another safeguard initially promised was that all patients would be able to check their records on the internet for mistakes. But a system involving the issue of smart cards to patients has not yet been tried out.
Why would a patient need a smart card? Anyway, have these people not heard of hackers? They are people with far more knowledge of systems than iSoft. There will be so many open doors to this information I would expect it to be available as a searchable DVD within a short time of going live.
Current criminal penalties are so weak they have failed to stop tabloid journalists and private detectives raiding such data on an industrial scale, according to a recent special report by Richard Thomas, the information commissioner.
There you go. Even tabloid journalists can do it!
Sir John Bourn’s National Audit Office also wrote a recent report warning of significant concerns among NHS staff “that the confidentiality of patient information may be at risk”. But officials persuaded the NAO to delete the warnings in the published version.The original draft said: “Patient confidentiality remains a controversial issue among critics … both as regards the adequacy of the planned safeguards to protect information, and whether patients should have a right to opt out of having their information recorded”.
Stunning! That those charged with serving your best interests treat you with such open contempt. You are meat. You are data. You are a commodity belonging to the nation, and anything you have or hold can be stolen and sold for ‘the public interest’. Are you ready to sold?
So, coming back to the good and bad of this article… it is a good stand-alone piece. However, no database now stands alone. It is clear from the above how police, immigration et al want access to every detail of peoples lives. This cannot be pointed out strongly enough. And it must be resisted with every fibre.
No apathy, apathy is complicity. No compliance, compliance is treachery. No NIR registration, registration is slavery.
What can you do? Today, against this NHS database, you can go back to the top and follow the link.
