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The NHS is selling your private data – here's the price list [pdf]

hscic.gov.uk

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Re: The NHS is selling your private data – here's the price list [pdf]

#11

Post by thinkpad20 »

switch007 wrote: post #3
ghswa wrote: post #2

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.

It's a long site so I'd just like to highlight the following: "The data extracted - your Primary Care Dataset - will include the following: Your NHS number Your date of birth Your postcode Your gender and ethnicity Your medical diagnoses (including cancer and mental health) and any complications Your referrals to specialists Your prescriptions Your family history Your vaccinations and screening tests Your blood test…

Crazy that one has to opt OUT of that, seeing as I'd bet only a minuscule fraction of the population would ever opt in...

Re: The NHS is selling your private data – here's the price list [pdf]

#12

Post by ghswa »

porker wrote: post #10
aaren wrote: post #5

Earlier quoted context omitted.

If you prefer, you can just write a letter to your surgery: - State that you wish to opt-out of care.data - Request that both the 9Nu0 and 9Nu4 codes are added to your GP records - Remember to include full names and DOBs (and your address if you are happy to)

The conundrum I have is knowing this has been done. I wrote a letter with all of this, took it to the GP surgery. The receptionist was bemused. There has been no acknowledgement. Can I tell if I've been opted out, without hassling the already-overworked reception staff?

Try talking to your practice manager - mine is very helpful and (s)he'll hopefully be much more clued up about this than the reception staff.

Re: The NHS is selling your private data – here's the price list [pdf]

#13

Post by UVB-76 »

joshavant wrote: post #7

Would 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?

It is exceptionally difficult, if not impossible, to properly anonymize this kind of data, and this particular dataset is absolutely not anonymized.

Re: The NHS is selling your private data – here's the price list [pdf]

#14

Post by foxhill »

joshavant wrote: post #7

Would 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?

perhaps.

the data is not anonymized.

Re: The NHS is selling your private data – here's the price list [pdf]

#15

Post by foxhill »

[deleted] wrote: post #8
joshavant wrote: post #7

Would 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?

[deleted]

there isn't even an attempt at anonymizing the data.

Re: The NHS is selling your private data – here's the price list [pdf]

#16

Post by pbowyer »

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.

Re: The NHS is selling your private data – here's the price list [pdf]

#17

Post by mortov »

joshavant wrote: post #7

Would 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 ? Simple, they'll even do that for you - look at Patient Tracking, Cohort Event Notification (!) etc.

The value of this data to marketers (e.g. health insurance, private hospitals - which do exist in the UK, etc. makes the price list charges trivial and insignificant to just slurp up everything they can and start targeting people). Want someone to try and sell you cancer insurance 2 weeks after your mother dies of breast cancer ? Cohort event notification report makes this simple.

Remember the toothpaste does not go back into the tube - once the data is sold, it's basically wild and free for all sorts of use and abuse. You have absolutely no guarantee it will only be used by benign 'good actors'.

edit:spelling

Re: The NHS is selling your private data – here's the price list [pdf]

#20

Post by ghswa »

pbowyer wrote: post #16

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.

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