I found out about this information today. It spells out how you can opt out, why it may or may not be a good idea and the possible results that your actions may have. I used the opt out form provided on the website to inform my GP that I want to opt out. If you want to more background information about this government backed scheme click here.

It’s excellent and easy! You add your name and address & your GP’s name and address and it provides you with a letter that states you want to opt out from having your GP data uploaded to the spine. It took me less than 5 minutes! 🙂

Advice to patients

There are at least three things you should be able to opt out from.

First, you can opt out of having your GP data uploaded to the spine – or so ministers have promised in the past. To do this, write to your GP [link to ‘opt out’ letter].

Consequences of Opting Out

The Department of Health (DoH) have tried using the argument that by having your details uploaded to the spine, they will be available in an emergency. You may indeed wish to consider this if you have a long-standing medical condition. However A&E Departments do work to established clinical protocols for patients for whom they no medical history, and logging in to a centralised database to reference what they hope are your medical records does not happen at present – and seems unlikely to happen in the near future. If you do have a condition, e.g. diabetes, or penicillin allergy, it would be far better to wear a medical alert bracelet.

Aside from this there should be no impact on your medical care, unless DoH changes the rules to make it so. Your GP will still have access to your records, held locally on the practice’s systems, and can treat you as usual.

Second, you can opt out of having your address and contact details on the Population Demographics Service (PDS) – the NHS ‘address book’. This is prudent if you’re on a witness protection program, or fleeing an abusive relationship. If you don’t, then hundreds of thousands of NHS staff will have access to your real name, address and phone number. If you’re the sort of person who goes ex-directory and ticks the privacy box on the electoral register, then this is for you. [Link coming soon]

Third, you can opt out of the Secondary Uses Service (SUS) which stores records of all hospital treatments in the UK. This includes particularly sensitive stuff like abortions and A&E treatment for drug overdoses. To do this you must invoke section 10 of the Data Protection Act and state that the availability of your hospital records to large numbers of civil servants, etc. causes you distress. [Link coming soon]

Both the second and the third of these opt-outs are likely to be resisted by the Department of Health. We believe however that it is your legal right to opt out, and that when thousands of people do so the Government will have no choice but to accept this.

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tboo · June 2, 2008 at 11:18 am

Re: The Big Opt Out

Just further info the Campaign and Advice line. It is run by NHS Managers and Nurses with extensive NHS experience.

I am Co-founder of The Big Opt Out and an NHS Manager with over 20 years experience we also work extremely closely with doctors who advise us as does a Prof of Security Engineering from Cambridge University.

I started the Campaign/Patient Organisation as with over 20 years experience in the NHS I could not opt out. My MP had to get a parliamentary debate about my case. I also became aware there was not a patient organistion that offered detailed, expert advice on medical confidentiality.

We keep NO patient information. Everything is absolutely strictly confidential and we are very happy for people to contact us anonymously via phone or email.


The Big Opt Out

Heena Modi · June 3, 2008 at 4:19 pm

Wow! You’ve had a bit of a mission with all this then.

Thanks for starting it Helen 🙂

What’s the email add that readers can reach you on?


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