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I await the shit storm when a public figures medical records are mined by the media divulging something controversial.
People with rare diseases, especially multiples, must be reasonably easy to deanonymise. Also joining the data with newspaper reports of crimes (perhaps only ones that are pertinent are mentioned, eg harassment of hospital staff) or hospitalisations would seem likely to deanonymise quite a few records.
What more do you need?
Earlier quoted context omitted.
It seems that in this case we are talking about "personal confidential data", which includes both. Their main page, http://www.hscic.gov.uk/dlesaac , states > Personal confidential data is data in which individuals are clearly identified, or there is a high risk of individuals being identified. This includes patient identifiable data, such as: NHS number, Name, Adress, [...] Personal confidential data also includes s…
Why kind of shitty low rent person lends thinks it's ok to work on this stuff?
But for our researcher these bits of information are important, so they apply and are assessed and they get access. And now their stats will include the age ranges and genders for the towns with less than 5 deaths.
Note that names or postcodes or etc are not included. Just the number of people dying by completed suicide; their age range; and their gender.
Medically identifying is inerpreted broadly because we know about the risks of seanonymizing data, and so small details can be identifying and not released without cautious assessment.
The intended use is not that insurance companies can link your medical data against you and then charge you more (or any variant on that). Instead, the intended use is that companies with clear information controls can perform useful research more cheaply, and stop guessing at cause and effect. I personally support that intent, and am interested to see what comes out of it.
What's to stop the companies just doing whatever seems to get them the most money? In my opinion, it'd be the fact that failing to stick within the agreement would cause existential risk to the company. I think that courts, government, the NHS, and UK society at large would come down VERY heavily on any company contravening their contracts. Companies are going to spend significant effort ensuring their company doesn't disappear overnight in a storm of lawsuits with the directors in jail.
Companies wouldn't do this for the same reasons that Seagate doesn't sell the data off RMA'd hard drives on the open market.
I trust the relevant public bodies in the UK to protect my interests here. You may not, of course.
A comment on one of the Guardian articles: J_smudger 24 January 2014 3:00pm I think there is confusion amongst some commenters here. This comes from reading a large amount of literature from the relevant pages on the NHS / Health and Social Care Information Centre (HSCIC). The HSCIC are basically a repository in Leeds, where all this information will be stored. Your GP records are going to the HSCIC as pseudoanonymis…
Because pseudonymous data is really hard to turn back into real data, right? Just ask the victims of the AOL leak.
http://medconfidential.org/how-to-opt-out/
Of course now that I read a bit more into it, I am less sure. But I do find the above link a little fear-mongery.
Incidentally, this document has some interesting insight into the position of the hscic. http://www.hscic.gov.uk/media/12931/Privacy-Impact-Assessmen.... I am a little tickled by this statement about preventing the data falling into the wrong hands: "The Government itself could be considered a pair of 'wrong hands' with questions raised over whether it would have access and therefore would be able to misuse or exploit the data".
Not sure how they're mitigating against that risk...
A good explanation of the scheme, from Dr Neil Bhatia can be found at http://care-data.info/ It includes details of how to opt-out.
Earlier quoted context omitted.
Well in Cardiff you'll be opted in to organ donation automatically of course.
You say this is a bad thing?
I think the thing that's missing from much of the discussion is that all released information is subject to a very clear contractual agreement and for specific purposes. The agreements limit the ability to link supplied data with anything else. These contracts and use of data are subject to privacy group oversight, managed by the NHS. The intended use is not that insurance companies can link your medical data against…
Supposing a leak happened. What makes you think you'll be able to tie it down to a single company? The data could be leaked anonymously, and the risk of such a leak becomes higher the longer this care.data scheme carries on for.
I fully expected to read the details and see that the headline was some sort of hyperbole, as these things nearly always are. I'm still hoping someone will tell me this isn't real. This seems downright evil. Disgusting. There is no justifiable reason for this data to be available in any sort of unanonymized form. Everything that is justifiable that can be achieved with it in anonymous form can be achieved with it ano…
>I fully expected to read the details and see that the headline was some sort of hyperbole It really is, see the source page for more details: http://www.hscic.gov.uk/dlesaac The misunderstanding going on in the comments seems to be stemming from a failure to distinguish between personal identifiable data and personal confidential data. The former: "This includes patient identifiable data, such as: NHS number Name Ad…
I would just like to point out that even if they "anonymize" the records it's generally not that hard to de-anonymize data. During the Netflix prize, randomly generated IDs were eventually matched to people based simply on movie ratings and matching public information in other public sources: http://www.wired.com/politics/security/commentary/securityma... With medical data, it will probably be trivial (maybe easier o…
http://www.connectingforhealth.nhs.uk/systemsandservices/inf...
Have a look at some UK medical information and see if you can de-anonymise it.
http://www.ons.gov.uk/ons/rel/subnational-health4/suicides-i...
Here's some data for suicide.
There are problems with confidentiality in the NHS - people leave patient records on monitors or send letters to the wrong address. But this kind of project is very different.