UK Residents: Your medical information for sale

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    and the hat of wrongness Salem's Avatar
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    UK Residents: Your medical information for sale

    Visit medConfidential | Keep my secrets to read more.
    This is a new database, that has nothing to do with your personal care.

    It's all about data mining for anyone who wants to buy it.

    You cannot stop your information being uploaded, all you can do is request that it is "made anonymous".
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    Cat
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    Quote Originally Posted by Salem View Post
    Visit medConfidential | Keep my secrets to read more.
    This is a new database, that has nothing to do with your personal care.

    It's all about data mining for anyone who wants to buy it.

    You cannot stop your information being uploaded, all you can do is request that it is "made anonymous".
    I'm not in the UK (in the US, HIPAA regulations would mandate data used in such cases be anonymous unless the patient specifically consented otherwise) but I'll play devil's advocate. For disclosure, I work at a company that makes health record software, and while we aren't now, I assume we will be submitting data to this program eventually, as we branch into the UK. I also personally believe that such data mining should almost always work with anonymized data (I've been a vocal critic of software like the now-defunct Google Health that permitted Google to use non-anonymized data, presumably as part of a long-term strategy to serve you with ads related to your health). I don't know enough about the UK plan to discuss it specifically, but I'll talk on my opinions on collecting large medical databases in general.

    I don't think it's entirely true that it has nothing to do with your personal care, particularly those databases which have only anonymized data. It allows health practitioners to sample data sets they could never collect themselves and find patterns that might not be obvious.

    For example, and you'll have to forgive my vagueness because I am recalling this from a presentation I attended over a year ago, one case where data mining has already been used successfully in the US was for a certain type of heart surgery. Treatment was always to give certain medications to reduce complications, but the standard of care was to give them starting about 24 hours after the surgery ended. It was known that giving the drugs too early would increase risk of other complications, but nobody really knew the best time to start. By mining the records for tens of thousands of such surgeries, they found that maximum benefit happened if the drugs were started at about six hours post-surgery. The standard of care shifted because of the data, and it is saving people's lives.

    That's what I see as the future of much of medicine - now that we have the technological capability to operate on such large amounts of data, we have the potential to learn things we never could before, since there's so much individual variance in their health and treatment that very large data sets are needed to actually identify patterns.

    Another possibility is in treatments of rare disorders. Imagine you have a disease that only a hundred people in the country have, and your physician has never seen it outside of a medical textbook. What if they could know which other doctors across the country have seen this condition before, what treatments were tried, and how successful the outcomes were?

    Lastly, it could help give you as a patient better information when deciding on a course of treatment for common ailments. For example, maybe you have the choice between a course of medication, or surgery. With data mining, you could actually be given accurate information about how many people tried each approach, good estimates of the risks of complications, and how successful each ended up being.

    I think there certainly needs to be care taken to keep medical records anonymous and to use such databases wisely. I certainly see how personally identifiable medical information can be misused. However, properly anonymized medical information has a lot of potential to do good, and everyone can reap the benefits.
    Last edited by Cat; 03-02-2014 at 01:14 AM.
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    I'm not in the UK either, but I doubt many people would have a trouble with their anonymised data being mined to provide information that improves medical care, Cat.

    Most people would have trouble with their personal data being mined so they can be targeted by marketeers selling medical products or services, or for rampant journalists to use in media articles. There might be a wrinkle for people with rare conditions, since it is harder to anonymise data for small groups of people.

    I agree the default should be data being anonymised.

    Obviously, personal data need not be anonymised when stored specifically for use by authorised people (medico, surgeon, etc) to support care of the particular individual. However, authorised people would need to be obligated (and trained) to safeguard privacy of each individual. And accesses of personal data would need to be routinely and independently audited.

    If other people or organisations have a need for non-anonymised data, there can be a defined process by which some central authorised people requests individuals for permission to release their personal data for specified purposes. If the need is great enough, it would need to be covered by regulation (for example, to get data on an individual who is believed to pose a medical risk to others, get a court order).
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    Quote Originally Posted by grumpy View Post
    Most people would have trouble with their personal data being mined so they can be targeted by marketeers selling medical products or services, or for rampant journalists to use in media articles.
    You won't get any argument there; I despise companies that seek to do that sort of thing. Doubly so, because not only are they doing the wrong things with medical data, they're making it harder for people who want to do the right things.
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    Medical personnel could have gained access to this data via a VPN or HTTP Tunneling service. That they are instead directly selling the data offers no debate as to the actual intentions of making it available to simply anyone who wants to buy it. Including marketeers.

    EDIT:
    Oh, and opt-out forms... Very useful for people without access to the internet, who don't know what is happening, leaving in remote areas, or suffering from all kinds of medical conditions which may incapacitate them from reading, understanding or signing them. Truly, Orwell got it completely wrong. It was Aldous Huxley who nailed it.
    Last edited by Mario F.; 03-02-2014 at 03:21 PM.
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