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

31–40 of 122 posts

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

#31

Post by pessimizer »

rpedela wrote: post #25
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...

No it isn't. U.S. health data can be sold if it is de-identified or with a patient's permission.

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'?

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

#32

Post by donskif »

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…

It is fairly simple to print off a form and send it in to your GP but I suspect the vast majority of people will see this as a hassle and never bother.

Considering recent government actions, I find it unsurprising that this is the only method - as far as I can find - to opt-out.

A simple form or email address would have been great. But we couldn't possibly have that for an online data service, oh no.

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

#33

Post by nodata »

dublinclontarf wrote: post #26

You can choose to have your information not included, it's an opt out system. Form is here: http://www.connectingforhealth.nhs.uk/systemsandservices/scr...

You are spreading misinformation, almost definitely not on purpose.

Read about the correct opt-out form here: http://optout.care-data.info/

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

#35

Post by nodata »

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?

Properly anonymised down to ~25 houses and with a date of birth? Yeah.

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

#37

Post by rpedela »

pessimizer wrote: post #31
rpedela wrote: post #25

Earlier quoted context omitted.

No it isn't. U.S. health data can be sold if it is de-identified or with a patient's permission.

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.

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

#38

Post by rpedela »

tansey wrote: post #30
rpedela wrote: post #25

Earlier quoted context omitted.

No it isn't. U.S. health data can be sold if it is de-identified or with a patient's permission.

But this data is not de-identified. They explicitly list prices for data with confidential, patient-identifying information.

"This would be straight up illegal in the US due to HIPAA, which guarantees a patient's right to privacy."

That is a blanket statement which is false. Some of what NHS is providing would be illegal in the U.S. Some of it is actually legal. I am mostly responding to the blanket statement.

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

#39

Post by vilhelm_s »

tansey wrote: post #30
rpedela wrote: post #25

Earlier quoted context omitted.

No it isn't. U.S. health data can be sold if it is de-identified or with a patient's permission.

But this data is not de-identified. They explicitly list prices for data with confidential, patient-identifying information.

The main page, http://www.hscic.gov.uk/dles , states

> The data we supply is normally pseudonymised. We only provide identifiable data when there is a lawful basis to do so i.e. with patient consent, approval under section 251 of the NHS Act 2006 which enables The Health Service (Control of Patient Information) Regulations 2002, or where appropriate statutory regulation is in place.

This "About Section 251" page, http://webarchive.nationalarchives.gov.uk/20130513181011/htt... , states

> Section 251 came about because it was recognised that there were essential activities of the NHS, and important medical research, that required use of identifiable patient information but because patient consent had not been obtained to use people's personal and confidential information for these other purposes, there was no secure basis in law for these uses. [NB. There are a few exceptions where there is a legal basis for disclosure e.g. reporting of notifiable diseases]. Section 251 was established to provide a secure legal basis for disclosure of confidential patient information for medical purposes, where it was not possible to use anonymised information and where seeking consent was not practicable, having regard to the cost and technology available.

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

#40

Post by pessimizer »

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.

How exactly would you 'de-identify' a NHS number?
Post reply on HN