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Because pseudonymous data is really hard to turn back into real data, right? </s>

Just ask the victims of the AOL leak.



The NHS has a lot more experience of anonymising data. They employ real scientists and statisticians. When they take pseudoanonymous data and anonymise it I am confidant that it is going to be hard to turn it into identifying data. They release it to approved researchers. And someone who deanonymises that data risks criminal prosecution - depending what they do with it.


Postcode, gender and birthdate are enough; not to mention NHS number and full medical history...


You seem to think that the NHS is releasing all this information.

It is not.

GPs send this "pseudo-anonymous" information to HSCIC. The HSCIC needs the extra information to create statistically useful cohorts. The HSCIC control access to that data. The HSCIC do some of their own statistics work and they release the results (but not the data sets!) which are often reported in UK news. Researchers, after being assessed, get access to anonymised sets of data. Researchers do not get all the information, but get an anonymised version of the pseudo anonymous data.

Note that reports released are also carefully anonymised.

You also seem to think that your GP holds your full medical history which is laughably wrong.

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


> Researchers do not get all the information, but get an anonymised version of the pseudo anonymous data.

Where are you getting this information from? Because the price list seems to say that there's identifiable data. Do you have some evidence to the contrary? Just saying "It is not" isn't really enough to go on.

> You also seem to think that your GP holds your full medical history which is laughably wrong.

It isn't laughably wrong at all. They do have your full medical history, either in paper form and/or on a practice management system like Emis. Sometimes you may have moved from one GP to another, and the old GP would print the record to paper and the new one would scan it in, therefore losing the Read clinical-coding (Yeah, for real!). Worst case, you move GPs and your record gets lost. In those cases the next time you go to your GP he/she will ask for your significant medical history, drug history, allergies, family history etc.

So even without storing everything your GP has all the pertinent facts about you. Those facts when in the wrong hands ...

Disclosure: I develop a practice management system used in the NHS and private sector in the UK.


...and it is now going to be available for sale to anyone who cares.

You're laughably wrong.

http://medconfidential.org/whats-the-story/

http://www.theregister.co.uk/2013/11/21/what_does_nhs_it_wan...

Did you even look at the price list? I guess not.

"Bespoke extract – containing personal confidential data"


But there are various safeguards in place for who can get database extracts containing personal data. The typical case is that all patients affected first need to sign a consent agreement. They charge a fee to cover the cost of processing the application.

In general, I'm kindof annoying with whoever submitted this URL to hacker news. I guess there are various complaints one can make about this system, but showing the price list in isolation seems calculated to just cause outrage without understanding...


I thought that your GP did hold your full medical history. I did some work doing data entry for a GP, and most patients had their full medical history on file at the surgery - in both physical and digitised form for the majority.




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