Will you allow your medical records into the NHS Database?

NHS opt out medical records

Yesterday I received a slightly scary looking letter from Lewisham NHS primary care trust. It asks whether I will be happy to allow my basic medical information (the “Summary Care Record”) to be uploaded into the Spine- the massive NHS IT project to centralise medical records.

I’m really not sure what to do about this. If any of you are doctors or work the medical profession, what are you advising people to do?

On the one hand, if I fall Ill somewhere in the UK, it would be useful for a doctor to be able to quickly get to my data. On the other hand, I’m very concerned that data can be easily re-sold to private companies in the future (who knows what could happen?) and I don’t want insurance companies to be able to sell my details between themselves.

Also my wife didn’t receive a letter, even though we’re both registered at the same surgery, and live at the same address…

I’m really in a quandry. Please advise!

UPDATE: Her letter came the next day.  To opt out, you have to print this PDF form out, and return it to your GP’s surgery.

10 Comments

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10 responses to “Will you allow your medical records into the NHS Database?

  1. Gill

    I got one of these as well. Having just read the Heather Brookes book, I’m probably going to opt out.

    It smacks of ‘thin end of the wedge’ to me. An absence of a SCR has never compromised any healthcare I have received.

    The BMA seem to have concerns too http://is.gd/bwQQs (mainly around security).

  2. David Alexander

    Had one from Greenwich back in February. I have until the end of May to opt out, which I will probably do. Partly on principle, partly because I’m paranoid.

  3. Jenty

    I need to know what will be on this record. If address, d.o.b and NI no., no way will I consent to these details being available to a hacker looking for identity theft.

  4. Anne

    Unlike other people commenting I have had problems this could have prevented. When I moved from Bath to London I went to my new doctor for various things including a repeat prescription and referral my old doctor had been about to sort and was told they couldn’t help as they didn’t have my records. They didn’t just go from surgery to surgery but via each PCT and it could take up to ten weeks! I had to arrange for them to be faxed. They only do this if you ask and I had to play telephone tennis sorting it out.

    Then there was the time my partner was found in Victoria Station with a head injury caused by a seizure he’d just had. I had to give medical info to police and paramedics while in a state of shock. It would have helped if he’d had one of these.

    I’ve noticed the people objecting among my friends are mainly those with no serious health issues. Those of us with ongoing conditions think it’s a good idea. As to identity theft, some of us already have names, ni numbers etc stored in the government gateway. They give you a long, randomised user id which makes it much harder to hack.

    I also think you can’t make every decision based on paranoia about indentity theft. As for selling your info, I highly doubt that will happen. I think everyone should stop being so paranonoid.

  5. Bob Land

    Address ,D.O.B and NI number, should not be a problem, addresses are kept by the Gas ,Water and Elec. companies on their computers, D.O.B. details
    are on local council computers , Electoral Rolls etc. NI numbers are kept on your employers computers plus Government computers.
    Your local GP probably has all these details anyway.

    Addresses are found in a mass of places,
    your library ticket details, Oyster card details Credit card, Bank card etc etc etc.

  6. No way would I opt out. Why would I? My details are already on the NHS central register anyway, all this will do is mean that they can be accessed by healthcare workers as and when they need to around the country. What’s the problem?

  7. Robin Tudge

    The problem is, as there is nothing so personal as medical data, can it be kept secure? It’s not just a quarter of a million health workers who can find out anything about you, it’s that this data, even when siloed at your GPs, is routinely lost or corrupted or left on discs in taxis and files in skips – the centralised NHS database is just a massive opportunity for everyone’s medical data to end up everywhere, if not be hacked or sold (medical info is priceless for pharmaceutical companies and blackmailers alike – and it is that value that the government puts on it that it would invest £20bn on this system, as the cost-benefit of the number of lives that the SPINE might save in no way justifies the outlay). Much data is already compromised by being sold by bent record transcribing services outsourced to India.
    Medi-bracelets or a card can inform any other of a pre-existing condition in case of emergency.
    For me, the real point is the ownership and control of this most personal of data. Some seriously apply the ‘nothing to fear’ argument, as if they know for a fact they’re going to remain in the best of health for the rest of their lives and wouldn’t care if the world and his dog knew about their piles; or the inferences that government agencies, employers, the DVLA, potato marketing board et al will make from their free access to the data and the ensuing decisions that will change people’s lives forever (especially in a risk-averse culture).
    It’s not a matter of paranoia, it’s a question of right of ownership over data, and whether the government can guarantee its security – it can’t, so it’s no go for me.

  8. Maria H

    I work in a mental health crisis team and I have a card that allows me access to the SPINE database. It wasn’t easy getting this card. I had to get my application approved by a senior manager and show 3 forms of ID to the data protection people.
    Even then, the information I have access to is restricted to name, address, dob, NI and GP address history. (as far as I know, this information has been held by SPINE on everyone registered at a GP or with an NI number for quite a while – it’s the addition of medical records themselves to the database that will be new).

    Any searches I make or information I look at on SPINE is recorded. Those who will be granted full access to medical records will no doubt have to prove they need this access for a good reason and will be carefully vetted. I know there have been incidents of people losing their jobs in the past for just looking at NHS records of people they shouldn’t have. This will no doubt continue.

    Personally, I have no problem with my details being online. It’ll allow for greater consistancy of care and reduce duplication of work.

    From a work point of view, I like it becuase our team can quickly identify the right treatment plan for people who become unwell while in our area. We rely on information from GP’s all the time and it can be frustrating having to wait until business hours to contact surgerys to check things out. It’ll also be easier to identify those who travel to other areas seeking unneccessary treatment.

    • cree

      I also work for an NHS mental health trust, but have major concerns over service users who were once given a pseudonym to protect themselves on the Trusts Database. Since this has been linked to the Spine these service users real names are visible for all to see.
      This leads to Trust staff who have received care from within its own Trust having their personal information available to all colleagues. On the electronic record system used within the Trust I work for, name, date of birth and address are visible before accessing the spine, therefore this information is available to staff, which can not be audited.

  9. Gerry

    I read the leaflet that came with the letter, and it said something about national data protection measures being rolled out sometime next year, maybe. Individual PCTs are currently in charge of data protection. This means that your data is being collected and stored on the system prior to data protection measures being made active, which worries me a bit – surely the data protection should come first.

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