Latest news

Filed under: Campaign News — Ross at 3:43 pm on Wednesday, December 27, 2006

We had a great run-up to Christmas, with thousands of people downloading our opt-out letter. We had a comment piece in the Guardian on the 21st, and there are many more media links here. There’s a lively discussion on the No2ID blog; we’ve appeared on political blogs from webcameron through select privacy to blogzilla; and we’ve starred in many medical blogs including Dr Crippen, Dr Rant and Dr Grumble. (I wonder why so many medical bloggers choose such depressing names?) We also seem to have stampeded the Department of Health into claiming to be the data controller of all GP records – which is wrong in law and has made the BMA seriously annoyed.

For a month of campaigning, we’ve done well. Medical privacy is now firmly on the national political agenda. A new campaigning season starts in the New Year, which we hope will be a very happy one for all our supporters!


Filed under: Opting out — phil at 10:54 am on Monday, December 18, 2006

Ross Anderson – Chair of the Foundation for Information Policy Research, Professor of Security Engineering at Cambridge University and one of the founder members of – went head-to-head with the recently-resigned Lord Warner (the man responsible for the current disastrous NHS IT ‘upgrade’) this morning on BBC Radio 4’s ‘Today’ programme. You can listen to the interviews using the BBC’s ‘Listen Again’ service [requires Real Player].

Professor Anderson made the telling point that people should opt out now, if only to wait and see if the government delivers the ‘protections’ that it is promising – and if it does, to see if they are sufficient and effective. If you use TBOO’s letter or leaflet, you can always change your mind and opt back in later.

TBOO is, after all, just taking the government at its word. Harry Cayton – ‘patient tsar’, and author of the report that is to be published today – promised back in March 2005 that, “You will be able to keep your data off the system.” You can see and hear him say just that, on the video clip linked from this BBC News item.

We’ll update this post through the day as more information becomes available, but we’ll leave you with a quote from Ross Anderson (see press release below): “So long as your GP hasn’t already uploaded all his records to a hosting centre, you are free and clear; you can instruct him not to and then you have medical ethics, the UK laws of confidence and data protection and EU law on human rights, all on your side.”

You can download a copy of TBOO’s latest press release here:

MS Word format [113KB file]

Adobe PDF format [103KB file] (download Adobe Acrobat Reader)

Opt out now - you know it makes sense…

Ministers’ offer of patient opt-out is just spin

Filed under: Opting out — phil at 11:48 pm on Saturday, December 16, 2006

On Monday an NHS taskforce chaired by ‘patient tsar’ Harry Cayton will publish recommendations on the extent to which patients can opt out of the NHS ‘spine’. This is being spun as a victory for patients and the press.

However, the opt-out mechanism that software companies have been told to implement is deceptive. GPs will first transfer all patient records to a ‘hosting centre’ run by government contractors. Summary records of all patients will then be generated and transferred to central systems. Finally, a blank record will be created in respect of each patient who has opted out, and this will also be uploaded to central systems to indicate that the patient has opted out. But the Department of Health (DoH) will already have a copy of the summary record, containing medical details that may by then have been transferred elsewhere or archived for later use.

Patients who have used the opt-out letter on the’s website have not just forbidden their GPs to share sensitive information with DoH, but also to inform the Department that information has been withheld. GPs who follow ministers’ proposals will therefore be breaking patient privacy.

Helen Wilkinson, National Coordinator of, said: “So long as Ministers continue to demand that all GP records will be kept at hosting centres under government control, the opt-out is a joke.”

Dr Paul Thornton, a GP and HIV/AIDS expert, said: “We have won the ethical, legal and political argument. But we have had weasel words from Ministers and Harry Cayton in this regard before. Look past their spin at the detail. Will civil servants have access to your sensitive medical data, and who will they be able to share them with?”

You can download a copy of TBOO’s opt-out leaflet here, to print and distribute:

MS Word format [188KB file]

Adobe PDF format [71KB file] (download Adobe Acrobat Reader

Mass patient opt-out moves to surgeries

Filed under: Opting out — phil at 6:10 pm on Wednesday, December 13, 2006

Many patients have already opted out since launched our campaign on the 29th November to get patients to opt out of having their medical information uploaded to the NHS ‘Spine’.

Today releases an opt-out leaflet that sympathetic GPs can leave in their surgery waiting rooms, so that patients will find it convenient to keep their medical records where they should be – between themselves and their doctor.

Helen Wilkinson, National Coordinator of, said: “We welcome the advice in E-Health Insider today from the Medical Protection Society, the doctors’ liability insurers, that patients have opt-out rights in respect of the NHS central databases, and that the MPS considers it appropriate for GPs to record patients’ wishes in the way that has recommended. We also welcome confirmation that the BMA fully supports patients who wish to opt out from the national database.”

Ross Anderson, Professor of Security Engineering at Cambridge, said: “A similar problem in Iceland was solved when doctors made it easy for patients to opt out of a proposed national medical database. The database was later changed from opt-out to opt-in, which settled the problems. I hope that a similar solution can be found in the NHS.”

You can download a copy of the opt-out leaflet here, to print and distribute:

MS Word format [188KB file]

Adobe PDF format [71KB file] (download Adobe Acrobat Reader)

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Latest Figures On Who Could Access Your Records

Filed under: Opting out — helen at 9:09 pm on Sunday, December 3, 2006

Here are latest DH figures on the number of NHS Employees who can currently access your name, address, ex directory phone number, date of birth, NHS number, GP details on the Personal Demographics Service, this is now operational.

When the Summary Care Record starts to become operational early next year ( unless you Opt Out) they will also be able to access the a summary of your medical history , prescriptions etc as well.

Although access to the clinical data, when Spine is operational, will be controlled by Role Based Access so in theory a Medical Secretary cannot see what a doctor can see. If is up to Registration Authority within a Doctor’s Surgery, Hospital etc to decide what access each member of staff its staff will have . Hence there almost certainly be a wide variation and so some administrative staff, secretaries etc will get access to your clinical record. The Role Based Access is not given out nationally but by individual local Registration Authority’s.

We do already have completely reliable evidence that in one incident non-clinical staff are accessing clinical records on the the Choose and Book system which forms a part of the NHS Care Records Service.

Currently 298,973 NHS employees are able to access this highly confidential information. This figure will increase considerably as not all NHS employees are registered to use the system yet.


National Coordinator
The Big Opt Out


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