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Oh... wait....
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…
This would be straight up illegal in the US due to HIPAA, which guarantees a patient's right to privacy. HIPAA = http://en.wikipedia.org/wiki/Health_Insurance_Portability_an...
>Latanya Sweeney, the director of Harvard University’s Data Privacy Lab, identified 35 patients from a Washington database by buying state medical data and creating a simple software program to cross-reference that information with news reports and other public records. “All I have to know is a little bit about a person and when they went to a hospital, and I can find their medical record in this kind of data,” Sweeney says. She says data in 25 other states are just as vulnerable.
The whole article is an interesting read. Apparently the data is sold pseudoanonymised in some states, leaving it up to the purchaser to truly anonymise the data.
[1]http://mobile.businessweek.com/articles/2013-08-08/your-medi...
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…
Regulation 5b allows the Secretary of State for Health to disclose confidential patient information for any medical purpose. No need for a national emergency. http://www.legislation.gov.uk/uksi/2002/1438/regulation/5/ma... :edit: gohrt pointed out that I'd overlooked the restriction to medical purposes in regulation 5, thanks.
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…
Bespoke extract – containing personal confidential data Annual Service Charge: £300 Per data set per year £262 Per additional year (per data set) £64 Either that's an incredibly bad title for that particular service, or they're selling data containing 'personal confidential data'. I'd like to know a little bit more about what that actually is.
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…
Regulation 5b allows the Secretary of State for Health to disclose confidential patient information for any medical purpose. No need for a national emergency. http://www.legislation.gov.uk/uksi/2002/1438/regulation/5/ma... :edit: gohrt pointed out that I'd overlooked the restriction to medical purposes in regulation 5, thanks.
Please edit your commment for correctness:
""" General
"confidential patient information may be processed for medical purposes in the circumstances set out in the Schedule" """
Whoever gets their hands on this data should build a "20 Questions" game, to identify a person's NHS number. Knowing something of my neighbour's recent medical history, I'm pretty sure it'd take 10 questions or less. Are there any restrictions on publishing the data? I can't find licensing terms.
Not exactly licensing terms but page 3 of the price list states that extracts subject to an annual fee will continue to be charged that fee until it is certified that all hard and soft copies of the data have been destroyed. Other than that I'm guessing they will enforce some pretty draconian restrictions on publishing and sharing the data since doing so would undermine their ability to sell the data.
Earlier quoted context omitted.
Did you look at the price list ? Standard extract – no personal confidential data £9,565 Alternatively for just under £1,000 more : Standard extract – containing personal confidential data £10,453 They're specifically enticing people to purchase the confidental data version since it is only 10% extra to get all the juicy information. Trouble connecting people to their parents, siblings, children, (ex)partners ? Simpl…
You can't just buy what you want from them without a legitimate legal basis. http://www.hscic.gov.uk/dlesaac
Contracts are not the same as controls.
Earlier quoted context omitted.
Bespoke extract – containing personal confidential data Annual Service Charge: £300 Per data set per year £262 Per additional year (per data set) £64 Either that's an incredibly bad title for that particular service, or they're selling data containing 'personal confidential data'. I'd like to know a little bit more about what that actually is.
This coversion is muddied by a failure to distinguish confidential information ("I have disease X"), from identifying information (my name/address)
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 sensitive data which may include items such as: Racial or ethnic origin, Political opinions, Physical or mental health condition, [...]
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…
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 Address Postcode Date of Birth Date of Death"
and the latter: "Personal confidential data also includes sensitive data which may include items such as:
Racial or ethnic origin Political opinions Religious or other similar beliefs Physical or mental health condition Sexual life Criminal record"
The patient identifiable needs explicit permission from the patient in order to obtain, patient confidential needs a good legal reason + reviewed application.