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Thread: Have you heard of Care.data? Here's why you should...

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    Have you heard of Care.data? Here's why you should...

    Care.data is a scheme run by the Health & Social Care Information Centre (HSCIC), which compels GPs to supply a variety of personal data about their patients. The data is NOT anonymous, and WILL be bought by third-party organisations. The first upload of patient data is due to start in March of this year, and once your data is collected, there is no way of deleting it. You CAN however opt-out of the scheme. More details about Care.data can be found here:

    http://www.care-data.info

    The government are supposed to be sending a leaflet to each household about Care.data, but I certainly haven't received one. I have however sent a formal request to my GP requesting that I opt-out from the scheme (the website explains how to do this).

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    The late but legendary peterb - Onward and Upward peterb's Avatar
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    Re: Have you heard of Care.data? Here's why you should...

    The website is just one GP's take on it, and the opt-out form comes from a dropbox account...

    The more authoritative links are

    http://www.hscic.gov.uk

    http://www.hscic.gov.uk/patientconf

    http://www.hscic.gov.uk/confguideorg

    http://www.hscic.gov.uk/media/12822/...dentiality.pdf

    http://www.nhs.uk/NHSEngland/thenhs/...care-data.aspx - This specifically addresses care-data and secondary uses of medical records

    http://www.hscic.gov.uk/datasets

    http://www.hscic.gov.uk/media/12823/...references.pdf

    There are concerns - but the linked document appears to contain some significant inaccuracies.

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    Re: Have you heard of Care.data? Here's why you should...

    I had a leaflet in the post, I'm not bothered.

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    Re: Have you heard of Care.data? Here's why you should...

    Which inaccuracies specifically? It is concerning that there hasn't been more publicity about this though. The fact that individuals will be identifiable by postcode is really not what I can 'anonymous'...

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    Re: Have you heard of Care.data? Here's why you should...

    Quote Originally Posted by Jimbobgod1969 View Post
    Which inaccuracies specifically? It is concerning that there hasn't been more publicity about this though. The fact that individuals will be identifiable by postcode is really not what I can 'anonymous'...
    The release of most data will be anonymous - you need to spend some time looking at the more authorative sites that specifically address the aspects of anonymity and confidentiality. I am not saying that there aren't potential issues, but having looked at the sites in some detail, I am not convinced that Dr Bathia's presents a balanced view. However, individuals should make up there own mind, based on as much information as they can find -not necessarily just the links I found (or Dr Bathia's)

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    Re: Have you heard of Care.data? Here's why you should...

    Basic relational database theory implies that for the data to be maintained, there must be a link between the individual, and their record to allow items to be amended and updated. Additionally, the statistical chances of someone in the same postcode area possessing the same combination of medical history will be pretty damn low, making it possible to link complete records with a high degree of certainity, given some of the more unique identifiers (e.g. age, weight, gender).

    Whilst the initial aim was to help streamline the provision of care for the end users, it's worrying that there's been little thought into how the information will be controlled and released. After all, even just for the NHS alone to have access, that represents approximately 1.35m people, or 5% of the workforce in the UK (admitedly it's impossible to extrapolate how many of those individual employees have legitimate access to the data)

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    Re: Have you heard of Care.data? Here's why you should...

    Quote Originally Posted by Lucio View Post
    ... the statistical chances of someone in the same postcode area possessing the same combination of medical history will be pretty damn low, making it possible to link complete records with a high degree of certainity, given some of the more unique identifiers (e.g. age, weight, gender).
    Interesting - what has similarity of medical history got to do with anything? Surely if someone's already got your medical history there's not going to be anything in the NHS data they wouldn't have? And frankly claiming that you can identify someone from their age, gender and weight within the kind of geographical areas that would be released under this scheme (they won't be handing out full postcodes, I assure you) is ... well, I can only assume that you've never seen a dataset of this kind before. Getting down to identifiable individuals is far from trivial, if it's even possible.

    And then, I'm not sure who you think would be doing this or what you think they're going to do with that information? It's not like the dataset is going to be released to the public. Any non-NHS applicants for the data will have to specify the reasons they want to access it, and they will be limited to extracting data that meets those purposes. I've worked with HSC-IC - if data were their blood, they'd be a massive slab of granite.

    One of the biggest issues with doing anything in the NHS is the inability to get decent data. You can't work out how effective treatments are, you can't work out trends in the spread or progress of diseases - essentially you can only work on hunches (or if you're a GP, you might get a feeling based on talking to patients in your surgery). Yet the NHS is sat on millions upon millions of routinely recorded observations, all of which can be used to get a much better understanding of both the impact of diseases and the impact of treatments. As with any large scale data project there are potential issues over confidentiality, but there's always the option to opt out if you're really that worried that "someone" might learn "something" about your medical history.

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    Re: Have you heard of Care.data? Here's why you should...

    Quote Originally Posted by scaryjim View Post
    (they won't be handing out full postcodes, I assure you) is ... well, I can only assume that you've never seen a dataset of this kind before. Getting down to identifiable individuals is far from trivial, if it's even possible.
    I expect a lot of the worry is going to be directed as insurance companies.
    They have a small subset of your data. That might not be enough to identify you uniquely if the postcode was reduced down to the level of say "HP12", but for example it would be pretty easy if you phone the insurers up and say you have moved from HP12 to SL6 for them to find someone of your gender, height and weight whose record moved between those locations.

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    Re: Have you heard of Care.data? Here's why you should...

    Quote Originally Posted by DanceswithUnix View Post
    I expect a lot of the worry is going to be directed as insurance companies.
    They have a small subset of your data. That might not be enough to identify you uniquely if the postcode was reduced down to the level of say "HP12", but for example it would be pretty easy if you phone the insurers up and say you have moved from HP12 to SL6 for them to find someone of your gender, height and weight whose record moved between those locations.
    Working on the assumption that access to this data would be controlled in the same way HSC IC currently control access to the health records they collect (yes, this already happens for a number of other datasets collected via GPs - it's not new, just expanding), the requester would have to demonstrate a need for the data, and would then have to provide information for HSC IC to match against - that is, HSC IC won't give someone the full dataset to explore, they'll give out a subset of it that matches records they already have.

    Now, I seriously doubt they'd be entertaining selling the data directly to insurers (although I've not read all the links above, so my apologies if I'm wrong), but even if they did they would provide a limited subset of the data, and only where there is a match between the information that insurer already holds and the HSC IC data.

    And again, I'm not sure why that's a worry. If you already have a relationship with the insurer they should know about anything relevant on your medical record, because you should've told them. If you don't have a relationship with the insurer, they won't have your details, so they won't obtain your matched records from HSC IC.

    I think it's pretty clear that most people don't realise that HSC IC already provide data to third parties using anonymised linkage. But they do it under very strict controls, and I don't see any reason to think that's going to change just because they have more data to handle - if anything they're likely to get stricter about releasing data.

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    Re: Have you heard of Care.data? Here's why you should...

    Thread resurrection time...

    So much for control of the data then.

    http://arstechnica.co.uk/tech-policy...te-opting-out/

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    Re: Have you heard of Care.data? Here's why you should...

    Quote Originally Posted by DanceswithUnix View Post
    Thread resurrection time...

    So much for control of the data then.

    http://arstechnica.co.uk/tech-policy...te-opting-out/
    Thanks for the (depressing) information....what utter muppets
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    Re: Have you heard of Care.data? Here's why you should...

    Quote Originally Posted by DanceswithUnix View Post
    Thread resurrection time...

    So much for control of the data then.

    http://arstechnica.co.uk/tech-policy...te-opting-out/
    Indeed.

    I had noticed this on the news a day or two ago, and as someone that did opt out, I am preparing to spit nails if I'm on that list of 700, 000 .... which seems pretty likely.

    As for
    According to The Guardian, HSCIC said that it "does not currently have the resources or processes to handle such a significant level of objectionā€¯ and that it also encountered "technical issues." The medical privacy organisation MedConfidential has said that it will be "writing to the Information Commissioner with a substantive complaint" about this state of affairs.
    Absolutely, utterly unacceptable. If they don't have the "resources", DON'T GO AHEAD!!.

    Besides, "technical issues"?? Load of "shoemakers". If that is the case, it is the result of utter, rank incompetence. The way it was explained to me is that "opting out" consists of putting read-codes on the patient's records. Providing the GP surgery correctly applied those codes, the request to upload should simply ignore relevant data types where such codes exist. And errors on those codes might explain a handfil of cases, but not wholesale cockup.

    If they can't code something that simple, they have no business handling extremely confidential and often sensitive information in the first place.

    I made sure I had written confirmation from my GP surgery that all relevant codes had been applied. If it turns out they've been ignored, I will also be complaining to the information commissioner, and considering what, if any, legal action is possible.

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    Re: Have you heard of Care.data? Here's why you should...

    Quote Originally Posted by DanceswithUnix View Post
    Thread resurrection time...

    So much for control of the data then.

    http://arstechnica.co.uk/tech-policy...te-opting-out/
    Good grief It was only a matter of time, really.

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    Not a good person scaryjim's Avatar
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    Re: Have you heard of Care.data? Here's why you should...

    Hm. Reading past the journalese there, it doesn't look like 700,000 people have had data shared. It looks like 700,000 people had asked to opt out of care.data, and some of them may/have had their data released because HSC IC weren't in a position to record the opt outs.

    Of course, playing devil's advocate, since care.data got shelved and the opt outs were for care.data, HSC IC could quite easily claim they've done nothing wrong, as they already had systems in place for release of data and the opt outs related to a different system that is not in place. I'm actually quite surprised - maybe even impressed - they haven't gone down that line. Someone's held their hands up and accepted they got it wrong. Quite unlike the NHS, in my experience.

    tbh, having worked with HSC IC in the past I'm not entirely surprised they failed to prepare appropriately for an entirely predictable high level of scepticism over the sharing of the national health dataset, nor that they were incapable of handling the (relatively) trivial technicality of recording a no-consent (something that the last large, centralised national dataset I worked with held as a matter of course). The frustrating thing for me is that I know the people with the technical skills to make all this work are currently employed in other parts of the NHS. So frustrating....

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