back to article UK patients should have greater data slurp opt-out powers – report

Patients must be allowed to opt out of their personal data being used for purposes beyond their direct care, a long-awaited report addressing concerns raised by the Care.data debacle has recommended. The report: Review of Data Security, Consent and Opt-Outs by the National Data guardian Fiona Caldicott and the Care Quality …

  1. James 51

    How is the government of the day not going to sell valuable data for a fraction of its worth and undermine the NHS at the same time if they are caught acting in the patient's and public's interest?

  2. Anonymous Coward
    Anonymous Coward

    I'm OK with my information being used for some kinds of research, but not others.

    I have a disability. I would be pleased to see genuine research into its causes and possible treatments. I would not like to see PGD or similar tests with a view to aborting babies who would be likely to have that disability.

  3. Kane
    Facepalm

    Yeah...

    "Patients must be allowed to opt out of their personal data being used for purposes beyond their direct care, a long-awaited report addressing concerns raised by the Care.data debacle has recommended."

    So, not buying into that whole "opt-out by default" thing then, no?

    "The National Data Guardian proposes a new opt-out model for consultation to enable people to opt out from their personal confidential data being used for purposes beyond their direct care, including supporting research to improve treatment and care."

    How about proposing a new opt-in model instead?

    See, if I remember correctly (I can't be bothered to trawl for the info), you could opt-out of the Care.data programme anyway. One of the main issues was how...uninformed the whole process was. Hence why GP surgeries around the UK went out of their way to print off the opt-out forms for patients. So all this report is saying, basically, is that you can carry on with what you were doing, you just need to better inform the public while you're doing it.

    So, another couple of thousand leaflet drops that will be left in a bin somewhere.

    1. Woodnag

      Actually...

      ...if you look at the word choice, " personal confidential data" is not what is being shared with world+dog for research anyway. So NDG is defending a straw man.

      The two (unaddressed) issues are:

      1. The metadata from the aggregate data can be de-anomomised (how many people have colon cancer stage 3 diagnosed at stage 2, 50-55 age range, married, smoke, don't drink, live in Gt. Manchester area, service/technician work level, obese, poor diet)

      2. The personal confidential data will of course be shared with 'strategic partners', 5 eyes for a start

  4. Pascal Monett Silver badge
    FAIL

    Still faffing about on patient control of data ?

    Funny that, I seem to recall a Yes Minister episode on that exact subject. I clearly remember a quote about access being subject to "the right to know and the need to know", and that people "shall have complete control over the data that concerns them".

    Yes Minister ; so actual that, apparently, it is still ahead of its time.

    1. allthecoolshortnamesweretaken

      Re: Still faffing about on patient control of data ?

      It's a timeless classic, because some things never change.

    2. Doctor Syntax Silver badge

      Re: Still faffing about on patient control of data ?

      "Yes Minister ; so actual that, apparently, it is still ahead of its time."

      As I always say, it should be part of the National Curriculum.

  5. Croc O'Dial

    The information is worth a lot and we the "owners" will get no payment in return. Once the lawyers and health insurance companies get their hands on it then anonymity will pass away. Even with the best intentions in the world the government will not be able to protect identities fully and once Google get their way they'll get it all regardless anyway.

    Consider writing to your GP and insist your data is not collected for distribution. It won't help but Royal Mail at least will benefit from the sale of the stamp.

  6. Anonymous Coward
    Anonymous Coward

    What's wrong with explicit opt-in consent *every* time they want to use your data, saying exactly what the use is?

    They could offer you a 50p discount voucher or something in return. That's usually enough to persuade people to do things.

    1. Raedwald Bretwalda

      "What's wrong with explicit opt-in consent *every* time they want to use your data, saying exactly what the use is?"

      The problem with any system that provides patients with a choice about use of their data (opt-in or opt-out) is the danger that the set of data allowed to be used might not be a representative sample of the population, and so any analysis done using the data would be skewed. So, imagine that well-educated middle aged men with bad eyesight and poor social skills are the most likely to be sceptical of allowing data sharing. Your sample will be skewed against people who are well-educated, or are middle-aged, or are men, or have bad eyesight, or have poor social skills.

      A system that provides all the data and which is trustworthy is the best system. The tragedy of the care.data farce is that government have behaved badly and so lost trust by trying to run it as a money making opportunity, rather than a public health care improvement or research opportunity.

  7. Oengus

    What it should be

    This data sharing consent should be EXPLICIT Opt-In with consent being required for any additional use of the data (not you consented before therefore you have consented now). There should also be serious penalties for misuse of the data or for sharing it with unauthorised entities.

    1. Richard 12 Silver badge

      Re: What it should be

      And if they actually did this, then GPs would start recommending that their patients opt in.

      Instead, they built a system where GPs not only recommended that all their patients opt-out, but actively made sure that they all did.

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