Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

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

hscic.gov.uk

Post reply on HN
Print view View original

81–90 of 122 posts

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

#81

Post by lettergram »

ryguytilidie wrote: post #77
lrei wrote: post #70

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…

Companies are TERRIBLE at this. We used a company to do an employee feedback survey. They promised us that the data would be delivered in a 100%, completely anonymized format. We sit down to go over the results and slide number one is "Men were a 100% approval while women were 73%". I'm the only male on my team. How in the world is this anonymous?

I know in my C.S. courses most of us guys/girls wont put down our gender on surveys so the 4 or 5 females in the room can maintain anonymity.

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

#82

Post by jon_black »

Let's say I believe that this data truly is anonymised (read: cannot be traced back to an individual in any way). I still have a problem that MY data is being sold by SOMEONE ELSE. The opt-out nature of this process stinks. It feels as though it's someone else's data by default unless I kick up a fuss.

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

#84

Post by dewiz »

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…

thank you!!

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

#86

Post by blueskin_ »

pessimizer wrote: post #42

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.

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

#87

Post by SideburnsOfDoom »

rpedela wrote: post #37
pessimizer wrote: post #31

Earlier quoted context omitted.

Does "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 results Your body mass index (height/weight) Your smoking/alcohol habits" seem 'de-identified'?

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.

> if it can be shown statistically that the individual cannot be re-identified.

A full UK postcode is very specific - not just which street, but which side and end of the street. "date of birth plus postcode" will in almost all cases identify one and only one person. This data is not actually anonymous at all.

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

#88

Post by smikhanov »

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?

Not only that, how do you know those codes are meaningful?

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

#89

Post by blueskin_ »

anigbrowl wrote: post #67
optimiz3 wrote: post #4

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...

You're assuming that NHS is selling it without the consent of patients. More likely this is for things like patients on drug trials etc. who sign a waiver to allow sharing of their health information. The UK takes confidentiality of public records pretty seriously and has done for years - I seriously doubt you can just just pull any given person's health records without their agreement.

No, it's everyone.

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

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

#90

Post by tomelders »

vilhelm_s wrote: post #59
gohrt wrote: post #55

Earlier quoted context omitted.

This coversion is muddied by a failure to distinguish confidential information ("I have disease X"), from identifying information (my name/address)

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?
Post reply on HN