Author Topic: It's Official: NHS 'Spine' - Government to ignore patient/doctor confidentiality  (Read 2638 times)

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Offline Geoff Reid

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Todays Sunday Telegraph

http://www.telegraph.co.uk/news/main.jhtml;jsessionid=OSTMOVIA2KN5RQFIQMFSFGGAVCBQ0IV0?xml=/news/2006/12/03/nhs03.xml

Does anyone still believe ANY government promises regarding opt-outs and respecting privacy ?

This bodes very badly for anyone who still thinks the government will honout its promises regarding the National Identity Register and Child Index.

Send your medical 'opt-out' forms in tomorrow......stand up and be counted before time runs out. http://www.TheBigOptOut.org/optoutletter

As far as your GP and the BMA are concerned, the opt-out is legally binding. Your GP cannot ignore it.


Quote
   

Patients will be ignored over privacy of records

Beezy Marsh, Health Correspondent, Sunday Telegraph
Last Updated: 1:32am GMT 03/12/2006

The Government is to reject the objections of any patients who do not want their medical records on its new centralised computer system, The Sunday Telegraph has learnt.
    

Doctors and experts on computer privacy warned that the Department of Health is prepared to ride roughshod over patients' wishes, despite concerns that by doing so it may breach privacy safeguards in the Data Protection Act and the Human Rights Act.

More than 60 per cent of GPs fear that the £20 million NHS computerisation project, which has been beset by difficulties and is over budget, will be vulnerable to hackers, meaning that sensitive details on up to 50 million patients could be leaked.

The first records will be uploaded to a central NHS computer next spring from a small number of GP practices.

An eight-page letter outlining how patients' opt-out requests are being rejected was placed on the website of NHS Connecting for Health – the Government agency responsible for the computer scheme – on Friday night.

Earlier in the day, Professor Sir Liam Donaldson, the chief medical officer, had faced fierce criticism from the British Medical Association for demanding that GPs should "shop" patients who say no to the database.

Yesterday, it became clear that Sir Liam wanted the names and addresses of objectors in order to write to them to tell them that their request would not be granted because their reasons were not "genuine". Many patients who wanted to opt out had cited a clause of the Data Protection Act, saying that uploading their information on to the summary care record – also known as the Spine – would lead to "substantial and unwarranted distress".

The Department of Health says that only minimal patient information, such as allergies, acute and repeat prescriptions and adverse reactions will "initially" be uploaded on to the summary care record, which will not contain any diagnoses or medical problems.

A covering document on the Connecting for Health website says: "The Department's response … explains it will not agree to their request to stop the process of adding their information to the new NHS database.

"The Department does not believe that processing their information in this way is a genuine reason linked to substantial and unwarranted distress."

The letter itself adds: "The Department of Health believes the summary care record will benefit both you and the clinicians that care for you."

Dr Paul Cundy, BMA spokesman for GP IT, said: "This shows the Government and Sir Liam are prepared to ride roughshod over the commonsense laws of confidentiality and privacy between doctor and patient." Dr Hamish Meldrum, chairman of the BMA GPs' committee, said: "This totally contradicts what ministers have said about giving people the right to say they don't want information uploaded."

A spokesman for the Department said: "Rigorous controls will be put in place to ensure the privacy of information and a service will enable people to access their records 24 hours a day."


Also see this thread: http://www.talkswindon.org/index.php?topic=1029.msg5773#msg5773


Offline Lynda

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Lynda  NO2ID 07802 151464  Those who would give up Essential Liberty to purchase a little Temporary Safety, deserve neither Liberty nor Safety.

Offline Lynda

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More from the clinicians who seem to be libertarians man and boy ( apart from Liam Donaldson, that is )


http://www.staffnurse.com/nursing-news-articles/total-turn-around-on-patient-record-confidentiality-2208.html

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The BMA now wants "urgent clarification on behalf of patients" on how the system will operate.

Dr Hamish Meldrum of the BMA said: "This seems to be a total turn-around on the assurances previously given by ministers that individual patients would be able to opt out of having their personal health records on the national database if they did not wish them to be included.

"Patients must be able to retain the right not to have their data uploaded in the first place, should they choose to do so. Denying patients this right ... is totally unacceptable."

Dr Paul Cundy of the BMA and Royal College of GPs IT committee added: "Patients do not have to prove severe distress. If patients decide they do not want their medical notes to go on the national system, they have an unalienable right under the Data Protection Act to refuse."
Lynda  NO2ID 07802 151464  Those who would give up Essential Liberty to purchase a little Temporary Safety, deserve neither Liberty nor Safety.

Offline Lynda

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If you want to keep your medical record private. OPT OUT.

   
Patients win right to keep records off NHS computer


John Carvel, social affairs editor
Saturday December 16, 2006
The Guardian
Quote
The government has bowed to privacy concerns about a new NHS computer system and conceded that patients should be allowed a veto on information about their medical history being passed from their GP to a national database.



http://www.guardian.co.uk/frontpage/story/0,,1973338,00.html
Lynda  NO2ID 07802 151464  Those who would give up Essential Liberty to purchase a little Temporary Safety, deserve neither Liberty nor Safety.

Offline NO2ID Swindon

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...or have they ?  :santa_sad:

Quote

......Lord Warner said it was not yet possible to guarantee a right of veto. Some doctors were concerned that patients might be putting themselves at risk by refusing access to records that could save their lives in an emergency.


......But he conceded it was technically possible for patients to refuse to let their data be uploaded and the government was considering how to make this happen.

.....The taskforce report says: "After a realistic period, it would be assumed that those patients who have chosen not to view their record are giving implied consent for it to be shared."


They haven't backed down at all.

They have merely delayed attempting compulsion until the political climate is more forgiving to the concept of 'compulsion for your own good'.

We must strive to keep the political climate hostile to all forms of government compulsion to surrender your privacy.

Opt Out Now!


« Last Edit: December 16, 2006, 09:23:50 am by Geoff Reid »

Offline Alligator

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Opting out does look doubtful   :santa_cry:

The emphasis is mine.

http://news.bbc.co.uk/1/hi/health/6184043.stm

Quote
Electronic care records go ahead 
 
There are fears the system will not be secure
Ministers are to press on with plans for a controversial electronic medical records system.
The government's patients' tsar Harry Cayton will say the system, which will hold records for 50m people in England, is needed to modernise the NHS.

Only people who can prove the system will cause them substantial mental distress will be exempt.

But doctors warned creating the record without a patient's consent could harm the doctor-patient relationship.

Health correspondent Adam Brimelow said the computerised patient record scheme is central to a huge and expensive upgrade of the NHS IT system.

Under the system, everyone will have a computer-based care file with basic information such as medication and allergies, drawn from GPs' records.

A poll of over 1,000 GPs by the Guardian newspaper last month found half would consider refusing to put patient records automatically on to a new national database.

Many said they doubted the security of the new system.

"Patients need to be properly informed and enabled to make informed choices" British Medical Association spokesman

Pilots will begin in the spring with national roll-out expected by the end of the year.

The government says it aims to make unscheduled treatment - including care in emergencies - quicker and safer, as well as protect patient confidentiality.

Patients will only be able to have their records removed if they can show holding them will cause them substantial mental distress.

However, they will be allowed to check the details are correct and make amendments online.

How more detailed and sensitive data will be stored is still being looked at.

Proposals for a so-called "sealed envelope" containing information which will only be shared on the patient's agreement are under consideration.

System

The electronic records system is part of a 10-year IT programme aimed at linking more than 30,000 GPs in England to nearly 300 hospitals by 2012.

It will also involve an online booking system, e-prescriptions and fast computer network links between NHS organisations.

Mr Cayton will publish a report on Monday making the case for the system.

The report is expected to say the current record-keeping system, which uses paper records, desperately requires modernisation.

It will point out many patients are harmed every year due to the unavailability of records or lack of quality data.

A British Medical Association spokesman said: "The BMA supports, in principle, the concept of an integrated centralised health record system.

"But it also recognises that there are important decisions for patients to make. Patients need to be properly informed and enabled to make informed choices.

"It is BMA policy that patients should give explicit consent before any healthcare data is uploaded - ie they should specifically opt-in to the system."

Offline Simon

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Just found some better news in the Guardian: http://politics.guardian.co.uk/publicservices/story/0,,1973339,00.html

Quote from: Guardian
This month the Department of Health sent more than 1,300 curt letters rejecting requests from patients for their medical details to be kept off the national database. But ministers have changed their minds after advice from a taskforce on patient records headed by Harry Cayton, the department's "patient tsar".

Under his scheme, GPs would ask every patient to give their explicit consent for a summary of their record to be put on the national database. They would be given a few weeks to review the summary and call for corrections or amendments to be made before they consented to the upload.

In a key departure from the previous position, the taskforce said: "Some patients may ask for their summary care record not to be shared or uploaded at all."

So it looks as if our GPs will be writing to us all asking whether our information can be put onto the database. But be sure to reply though...

Quote from: Guardian
Mr Cayton has allayed the concerns of the British Medical Association about patients who do not respond to a request from the GP asking if they consent to their medical summary becoming available on the database for use throughout the NHS.

The taskforce report says: "After a realistic period, it would be assumed that those patients who have chosen not to view their record are giving implied consent for it to be shared."

Implied consent. That'd be a highly specialised form of explicit consent then, would it?

Beware the NuLabour elastic dictionary.  :santa_angry:
We are all in this together, but some of us are more in it than others (with apologies to George Orwell)

Offline Geoff Reid

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Don't take anything that's being said for granted.

Ignore the presentation, ignore the tone of voice.

Listen explicitly to the actual wording and ignore subtle implication.

What was actually said was:

An opt out is not be guaranteed.

I believe the Government wishes to adopt the following pre-opt procedure:

The government intends to insist that: You must view, and challenge, your 'summary care record' before a request NOT TO UPLOAD your summary care record will even be considered.

Failure to 'view and challenge' your summary care record will be interpreted that you have given your explicit consent to the uploading of your summary care record.

Even if you view and challenge your summary care record, then subsequently request that your summary care record NOT BE UPLOADED to the NHS Spine, your request will be denied unless you can prove substantial mental suffering will result as a result of the uploading of your summary care record.

This is disgraceful, quite apart from the civil liberties and privacy issues, this procedure deliberately makes it as difficult as possible for people to officially register their dissent.

Opting out now is easy, and it alerts your GP that you're not happy.

If enough people hand in their opt outs now, it's possible the GP's resolve against compulsory uploading will harden further....

.....Ideally to completely refuse to upload patients records without informed written consent from the patient.

Offline Alligator

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Another potential loophole in all of this comes with the words "After a realistic period, it would be assumed that those patients who have chosen not to view their record are giving implied consent for it to be shared."

Anyone care to guess what this timeframe may be?

If this had said 'reasonable' you may be able to hope that the time allowed for this would ultimately be required stand a test of reasonableness in court if the govt were challenged, but their choice of words here makes me think this 'realistic' time will be mandated, at the government's will with no, or little logical basis.


Offline CogDis

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There's an attack from a different angle as well, the British Computer Society (Sanford St., Swindon) has issued a report on Health Informatics, which says:


1.12 There are major issues about the sharing of electronic patient data which need to be resolved whatever the shape of future informatics in the NHS. These must not be hijacked by technical issues, and informed patient consent should be paramount (Patients, carers, healthcare professionals, DH, Information Commissioner - 3.5, 5.3 & 5.4).
1.13 Information sharing between care professionals should initially be by messaging using the Spine TMS service pending further work on information governance and the National Care Record Service (NHS CFH & LSPs - 5.4).

1.15 Put implementation of the Personal Spine Information System (PSIS) on hold (DH, NHS CFH


The significance of the use of the Spine for 'messaging' is that they're saying that initially at least the Spine should be used for *sending* data from where it is (with a GP in Swindon say) to where it's needed (an A&E in Aberdeen) - not for permanently *storing* data.

Summary of the report here: http://www.bcs.org/server.php?show=ConWebDoc.8970 and the Full Monty here: http://www.bcs.org/upload/pdf/BCS-HIF-report.pdf It's not impossible that this was a factor in the shift of stance by HMG.

Coggie

Offline Tobes

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Good report about this on Radio Four Today for those of you with access to 'listen again' via the web.

The interesting points raised for me were the difficulty of correcting incorrect data - and the 'cross agency' (including police and social services) access to said data.

Oh George Orwell, you were so right, just 25 years early in your setting...
I do not agree with what you have to say, but I'll defend to the death your right to say it - Voltaire 'Entia non sunt multiplicanda praeter necessita

Offline Simon

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I printed off the standard letter to opt out, and posted it to my GP on Tuesday. Today I got a reply through my door.

Quote
Thank you very much for you letter exercising your right to refuse consent for uploading your records to the spine. I would of course absolutely refuse to disclose this correspondence. I was absolutely disgusted that the Chief Medical Officer wanted GPs to tell him when people made this request. This will not happen from this practice!

 :santa_afro:
We are all in this together, but some of us are more in it than others (with apologies to George Orwell)

Offline Lynda

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In a sea of stupidity comes a voice of sanity.

Perhaps your G.P would like to print off some of the generic letters and make them available to her other patients.

Lynda  NO2ID 07802 151464  Those who would give up Essential Liberty to purchase a little Temporary Safety, deserve neither Liberty nor Safety.

Offline Lynda

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Lynda  NO2ID 07802 151464  Those who would give up Essential Liberty to purchase a little Temporary Safety, deserve neither Liberty nor Safety.

Offline Margie

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I got round to sending the standard letter to my GP early in March and he replied a week later, very carefully detailing exactly what he had done.

Quote
Thank you for your letter concerning your right to opt out of having your records entered to the national system.  I have put this to your "consultation" record and for good measure put it in your patient history so that it is obvious each time your records are opened that you have this read code entered as your historical record also.  This is just to help to make it look more obvious.

I have also scanned your letter into your notes.

You may be aware that the whole project is at present fraught with difficulties so when all this becomes relevant is anybody's guess.

Offline Geoff Reid

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Todays Swindon Advertiser


 

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