NHS Database: All or Nothing

! This post hasn't been updated in over a year. A lot can change in a year including my opinion and the amount of naughty words I use. There's a good chance that there's something in what's written below that someone will find objectionable. That's fine, if I tried to please everybody all of the time then I'd be a Lib Dem (remember them?) and I'm certainly not one of those. The point is, I'm not the kind of person to try and alter history in case I said something in the past that someone can use against me in the future but just remember that the person I was then isn't the person I am now nor the person I'll be in a year's time.

I arrived home from work this evening to find a letter from the NHS.

This letter was informing me that unless I opt out by the 31st of May, the NHS will create a “summary care record” in their spangly new multi-billion pound database.  The pitch informs me that in the first instance only details of any allergies, bad reactions to medicines and any medication I’m currently on will be included but “other important information such as serious illnesses, long term conditions and/or test results” will be added to the record.

Now I don’t have a problem with the whole NHS knowing that I have an allergy to penicillin, nor do I have a problem with them knowing that I have an inhaler for asthma.  In fact, not only don’t I have a problem with it, I positively welcome that information being available to anyone in the NHS that needs it because if I was taken into hospital for some reason and was unable to speak for myself, it’s important that the medical staff know that I have asthma and that I have an allergy to penicillin.

It makes sense that a serious illness should be on the record but if I’m knocked unconscious and taken to hospital, do they need to know that I have arthritis?  If I’d been to the doctors and had a routine blood test, would they need to know?  I don’t think they do and I’m not prepared to give the NHS or any other agency that plugs into the database in the future (and there is very little doubt in my mind that this database will be added to, shared and linked into other databases in the future) permission to record any medical details they see fit about me in a database that’s available to tens of thousands of people in the NHS and beyond.

There is no way to control the amount of information that they record in the “summary care record” – you either agree to nothing or you agree to whatever they decide to put on there and whilst you can view your own record any time you want, you can’t remove anything from it.  If it was possible to choose what type of information was recorded on the “summary care record” I would happily agree to it but as I’m not allowed any control over what goes on it and where it goes I’m going to opt out.


  1. Kevin Cole (6 comments) says:

    Sounds like a great idea in theory.

    My concern is that insurance companies will get hold of it and start invalidating motor and life policies – try sorting out a mortgage or insuring your car then!

  2. CherryPie (69 comments) says:

    I got one of those today too! The idea is great but I don’t trust the security of the government databases! Not that there is anything very interesting on my records for me to worry about.

  3. wonkotsane (1133 comments) says:

    What security? The leaflet tells you about all this wonderful security – a chip and pin card, only relevant information will be available, you have to give your permission – but none of the security is in place yet and won’t be for some time. The telephone helpline don’t tell you that though, they tell you the security measures are in place. The helpline is just a sales department for the database, they don’t offer any impartial advice.

  4. Home Rule for England (10 comments) says:

    I’m going to opt out. Unless you are taken to hospital seriously ill then you can tell whoever needs to know what your conditions are.
    Anyone who is concerned could carry a note with them with their condition.

  5. John (37 comments) says:

    I’m not 100% sure about this but I think you can link this NHS data base to an EU wide data base. Someone more skilled in the dark arts of finding links via the internet would no doubt confirm that this is true.

    Incidently, if you go onto the EU website for Information commissioners ( yes, this is job is based on an EU directive and EU wide) you find the Princiles that underpin the Directive, these cme straight from Orwell and ‘Double Speak’. They are not nice cuddly folk protecting your data but are working for the political eleites.
    I’m telling them to shove mine whre the sun don’t shine! Wonko, wear a med tag, you control it!

  6. FaustiesBlog (1 comments) says:

    I have opted out, but took my form to my GP, hoping to get some form of receipt, as proof of my wish not to be on the spine.

    Nope, no receipt.

    So it’s my word against theirs, should there ever be a dispute. And how do I know that my data won’t be on there, anwyay?

    I guess I’ll find out next time I fall ill in a county which is not my own and they somehow know all about my medical history.

  7. John (37 comments) says:

    Not as difficult to find the hand of the EU as I thought. Just a simmple google search away and to boot the EU want to link up with a similar scheme brought in by ‘Barry O’Barmy. now, what would stalin have done with all this lovely info on folks? Don’t sign up is my advice.

  8. John (37 comments) says:

    Not as difficult to find the hand of the EU as I thought. Just a simple google search away and to boot the EU want to link up with a similar scheme brought in by ‘Barry O’Barmy. now, what would stalin have done with all this lovely info on folks? Don’t sign up is my advice.

  9. Camille (1 comments) says:

    I understand your reluctance to sign up for the Summary Care Record with having so little say on how the data is managed. There is a high level of concern shared between the public about NPfIT’s ability to maintain the privacy of this national database and I don’t think they have been very vocal about what measures they will implement to protect it.

    The NPfIT will have to work to merge all aspects of a medical record into one database so they will have a full electronic profile of you and your medical history. I don’t believe they will be able to exclude certain information but could work towards using a tiered permission based system.

    Certain employees of the NHS would be granted high level privileges like doctors, who could access your full medical records if needed but there would be access logs for traceability. In an emergency for example an A&E appointment the necessary data like allergies and blood type would be easily accessible to a wide range of staff. In this way the NHS could implement departmental level access based on the employee’s job title.

    Alternatively, they could potentially setup a system whereby the patient releases rights to their full medical data through a biometric identity check used to unencrypt full or specific aspects of medical records, or through an identification card which they could use to release this data when necessary. Unfortunately biometric identity checks still have some way to go before they can avoid matching false positives or false negatives and identification cards would be an additional cost.

    Please let me know your thoughts on the above.

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