Does anyone know if this is England-only, or if it affects Wales/Scotland/Northern Ireland too? How does the opt out work if you've been in multiple areas/GPs/etc.?
It's [NHS] England only (currently).
The NHS is selling your private data – here's the price list [pdf]
41–50 of 122 posts
Re: The NHS is selling your private data – here's the price list [pdf]
#42J_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 pseudoanonymised information, which as has been said does indeed include your NHS number, date of birth and postcode. The HSCIC will then build up a database of this information. They can indeed pass on certain of this information to certain external interested parties, although when they do this the data becomes truly anonymised as opposed to pseudoanoymised. You can read about this in the NHS published guidelines (although not in the rather patronising leaflet), as well as from the documentation of the HSCIC and the government itself.
To quote the HSCIC:
we take out details that could identify you before we make any information available
At the NHS: there are no personal details such as your date of birth and postcode included... We would never publish this type information because there is a risk that you might be identified.
The HSCIC can only release identifiable information when (1) you specifically ask them to, or (2) hypothetically, when there is a national emergency such as a highly virulent pandemic. This would require a legal process.http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pa...
http://www.hscic.gov.uk/article/3399/Rules-for-sharing-infor...
Or if you have a hour to spend read this:
http://www.hscic.gov.uk/media/12931/Privacy-Impact-Assessmen...
... or perhaps just sections 3.3.4. and 3.3.5.
Re: The NHS is selling your private data – here's the price list [pdf]
#43Opportunity here for the motivated - the prices seem high, so arbitrage the price by reselling the data at lower prices to multiple buyers. Bonus: you could set up a system where a person's data gets cheaper as more people query it! (Not for me thanks.)
Re: The NHS is selling your private data – here's the price list [pdf]
#44Earlier quoted context omitted.
That sort of data can be included in de-identified health data in the U.S. if it can be shown statistically that the individual cannot be re-identified.
How exactly would you 'de-identify' a NHS number?
Re: The NHS is selling your private data – here's the price list [pdf]
#45A 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…
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.
Re: The NHS is selling your private data – here's the price list [pdf]
#46A 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…
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.
Re: The NHS is selling your private data – here's the price list [pdf]
#47A 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…
Re: The NHS is selling your private data – here's the price list [pdf]
#48Re: The NHS is selling your private data – here's the price list [pdf]
#49This 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...
Re: The NHS is selling your private data – here's the price list [pdf]
#50Would this enable the private industry to create services and analyses based off this cheaply available data? Yes, it seems heinous at first, but are there legitimate, palatable Big Data opportunities here, assuming the data is properly anonymized?
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…