"connecting for health" - opt out or not?

Discussion in 'Current Affairs, News and Analysis' started by OldSnowy, Apr 16, 2010.

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  1. OldSnowy

    OldSnowy LE Moderator Book Reviewer

    I got home last night to find a pile of large envelopes from the NHS, telling me that my (and the rest of my family) were to have our medical records put on the new super-dooper NHS IT system, and therefore available for any authorised person to access. This is, of course, for my own good.

    Having some considerable experience of Government IT systems I am a little sceptical of the idea that this information will only be used for good clinical reasons. At the moment my GP and his team can laugh at my shortcomings (if I had any...) but the thought of many 'Officials' having access to my information – and it is private information about ME, not something that I want every Tom, Dick or Harriet to gawp at - raises some concerns.

    For me it boils down to a simple question: do I trust the Government enough to protect my data, such that I weigh the advantages of being on this system above the disadvantages? After a swift, the advantages were best summed up in these entries from the the “Connecting for Health” FAQs page:

    What is the NHS Care Records Service?
    The NHS Care Records Service is a secure service that links patient information from different parts of the NHS electronically so that health-care staff and patients, have it when they need it to make care decisions.
    How will the NHS Care Records Service work?
    At the moment, a lot of information is kept within one NHS organisation and not easily available anywhere else.
    With the new system, people who are treating you will be able to access those parts of your records that they are allowed to see whenever they need it to provide you with care.
    You will be able to see your Summary Care Record whenever you want to online via HealthSpace and together you will be able to make informed decisions about your care. You can choose what information is available to those treating you.

    So far so good. But is there a downside?

    Checking the internet, it was easy enough to find reams on this subject, and there is certainly enough there to make me very suspicious of the whole thing. For instance:

    The “Private Eye” report into the whole NHS IT system fiasco, from 2007:

    Many concerned voices have developed this Wiki:

    I have now decided to opt-out of this particular data-store. However, there is no opportunity to do so in the info contained in the large white envelope. Why is this, I wondered? Turns out, it’s because we are too stupid to be allowed the opportunity. From ComputerWeekly.com:

    Millions of information packs on the Summary Care Records are due to be sent to patients across England. The SCR is a central database of medical information. It's part of the NHS IT programme, the NPfIT. Many GPs say the information packs should include an opt-out form. Otherwise patients who wish to opt out may not do so because they'd have to ask for a form or go online. London GPs have taken the decision to make it easier for their patients to opt-out. In a letter to GPs this month, GP Gillian Braunold, the NHS Connecting for Health Clinical Director of Summary Care Records and HealthSpace, says why opt-put forms are not included in patient information packs. She says that experience from early adopters showed that patients "misread the opt out form and filled in everything, including the opt out form and sent it back in the pre paid envelope when in fact this is not what they wanted". Braunold: "Experience from the early adopters showed that patients misread the opt out form and filled in everything, including the opt out form and sent it back in the pre paid envelope when in fact this is not what they wanted.

    Nice to know I’m too brainless to make a choice here! But of course, ‘choice’ indicates that I may think that this is a bad thing, in which case I’m obviously wrong, as Clever People know much better, so I’m wrong to even consider it…

    Finally, I found this, printed it out, and will take it to my GP next week by hand:

    This is my personal choice, and I cannot advise others, but I would just say – do you trust the government not to access and use information held in this manner, given their track record?
  2. OldSnowy

    OldSnowy LE Moderator Book Reviewer

    Sorry, it just came to my attention as the Forms are now out - it's decision time.
  3. Some great insights and comments on that thread. The thread helped me make my mind up to opt out and there is a useful link to download an opt out form on the thread. As an NHS paper pusher I was dithering about opting out but ARSE contributers showed me the light, so to speak.