Live data from Hacker News

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

hscic.gov.uk

101–110 of 122 posts

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

#101
post #94

Earlier quoted context omitted.

Because pseudonymous data is really hard to turn back into real data, right? Just ask the victims of the AOL leak.

The NHS has a lot more experience of anonymising data. They employ real scientists and statisticians. When they take pseudoanonymous data and anonymise it I am confidant that it is going to be hard to turn it into identifying data. They release it to approved researchers. And someone who deanonymises that data risks criminal prosecution - depending what they do with it.

Postcode, gender and birthdate are enough; not to mention NHS number and full medical history...

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

#102

I think the thing that's missing from much of the discussion is that all released information is subject to a very clear contractual agreement and for specific purposes. The agreements limit the ability to link supplied data with anything else. These contracts and use of data are subject to privacy group oversight, managed by the NHS. The intended use is not that insurance companies can link your medical data against…

Let's be clear, the intention is for the UK Government to make money off your medical data.

If Seagate wanted to make money off your RMA'd hard drive and they thought the data on it would do the trick, you can bet it would be for sale on the open market.

If the law says that is illegal, Seagate does not have the option to change it. However, the Government can simply change the law to make whatever they want to do 'legal' and their problem is solved. That's essentially what they've done here.

Large 'healthcare' companies interested in this data are more than just health providers, they have multiple divisions with multiple competing and tangential aims and targets. Just because a piece of paper says it can only be used in one way, that is not going to stop the re-use (and leaking) of the data.

Remember the UK had bankers totally screwing the country and got rewarded with massive bail-outs - I don't recall any jail time for their bad behaviour [in the UK]; quite the reverse. Any social science student will be able to cite many examples of companies shielding individuals from the consequences of their bad behaviour - it's a whole subject area.

The UK government sets up QUANGOs specifically to shift liability and risk to prevent consequences; a Scottish care home where elderly people were burned to death escaped prosecution as the legal entity was simply shut down and dissolved prior to the court case starting [this did bring about legislation changes to close that avenue in Scotland http://www.bbc.co.uk/news/uk-scotland-17740645]. There are dozens of ways to get away with abusing the data and walk away free - if you're going to make a lot of money, you can afford good lawyers to help you prepare well ahead.

Why would it be different for your health data ?

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

#103
post #30

Earlier quoted context omitted.

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, htt…

"... or where appropriate statutory regulation is in place"

You do know that means civil servants have written a statutory order, it has been signed by the minister (might have to be Secretary of State) and it has been placed in Parliament for a week (no vote required). [Exact details may be wrong but that is the overall concept of statutory orders].

My comment is based on a general understanding of statutory orders/secondary legislation and there may be specific reasons why it doesn't apply in this case but it appears to me to be a significant hole in the text you quote that you may not have noticed.

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

#104
post #10
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?

Write a letter and address it to the practice manager or the caldicott guardian. Ask for a response within 28 days to tell you what is happening.

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

#105
post #100
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…

No company is going to resell medical data. We have laws to protect personal information and they are very strict for medical information. http://www.connectingforhealth.nhs.uk/systemsandservices/inf... Have a look at some UK medical information and see if you can de-anonymise it. http://www.ons.gov.uk/ons/rel/subnational-health4/suicides-i... Here's some data for suicide. There are problems with confidentiality in t…

And .. suppose a company does sell it. Or an attacker breaks into their system and steals it. Or someone abroad takes it and is out of the UK's jurisdiction.

Medical data can't be got back.

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

#106
post #105
post #100

Earlier quoted context omitted.

No company is going to resell medical data. We have laws to protect personal information and they are very strict for medical information. http://www.connectingforhealth.nhs.uk/systemsandservices/inf... Have a look at some UK medical information and see if you can de-anonymise it. http://www.ons.gov.uk/ons/rel/subnational-health4/suicides-i... Here's some data for suicide. There are problems with confidentiality in t…

And .. suppose a company does sell it. Or an attacker breaks into their system and steals it. Or someone abroad takes it and is out of the UK's jurisdiction. Medical data can't be got back.

There are criminal offences covering selling of that data, or storing it in such a way that it is released, or moving the data out of the UK.

There are problems with confidentiality of data in the NHS, but this isn't one of those examples. Have a look at any of the very many examples of anonymised information released by the NHS and see if it's possible to deanonymise it.

It's important to note that this story is only about the new development of information held by GPs. A similar scheme has been running for a while now covering information held by hospitals.

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

#107
post #94

Earlier quoted context omitted.

The NHS has a lot more experience of anonymising data. They employ real scientists and statisticians. When they take pseudoanonymous data and anonymise it I am confidant that it is going to be hard to turn it into identifying data. They release it to approved researchers. And someone who deanonymises that data risks criminal prosecution - depending what they do with it.

Postcode, gender and birthdate are enough; not to mention NHS number and full medical history ...

You seem to think that the NHS is releasing all this information.

It is not.

GPs send this "pseudo-anonymous" information to HSCIC. The HSCIC needs the extra information to create statistically useful cohorts. The HSCIC control access to that data. The HSCIC do some of their own statistics work and they release the results (but not the data sets!) which are often reported in UK news. Researchers, after being assessed, get access to anonymised sets of data. Researchers do not get all the information, but get an anonymised version of the pseudo anonymous data.

Note that reports released are also carefully anonymised.

You also seem to think that your GP holds your full medical history which is laughably wrong.

Start here: http://www.hscic.gov.uk/patientconf

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

#108
post #102

I think the thing that's missing from much of the discussion is that all released information is subject to a very clear contractual agreement and for specific purposes. The agreements limit the ability to link supplied data with anything else. These contracts and use of data are subject to privacy group oversight, managed by the NHS. The intended use is not that insurance companies can link your medical data against…

Let's be clear, the intention is for the UK Government to make money off your medical data. If Seagate wanted to make money off your RMA'd hard drive and they thought the data on it would do the trick, you can bet it would be for sale on the open market. If the law says that is illegal, Seagate does not have the option to change it. However, the Government can simply change the law to make whatever they want to do 'l…

Sorry, but I don't agree with the premise and the first line of your comment. Much of the rest I do agree with.

The NHS (not "the government" - which is an emotionally charged noun in this sort of circumstance) is selling the data. They are in financial difficulty, yes, but they are also responsible for broad social-health in the UK.

The NHS is in an almost unique position world-wide, in that they have access to high quality data that can dramatically improve health at an international level. They aren't, however, a research group. Companies just do research better than government departments, and finding a balanced way to improve access to the data and improve social health is critical to the NHS's future as the population ages.

This is why they are selling health data, imho.

I think there's a balance to be struck. The global and NHS specific improvements in health need to be balanced against individual privacy.

Unfortunately, the only way to do this is through "pieces of paper" (again, an emotive term).

It's also worth mentioning that many of these pieces of paper have already been in place for years, where they have been sharing hospital data. So to some degree this extends an exiting structure that is already working. It's just more emotive to many people since it involves a centralised location, and their local GPs.

I'd rather have a centralised location with oversight fighting down a multinational, than my local GP trying to manage legal contracts with them.

It's difficult to respond to your specific examples. Some are completely valid. Some are (imho) not. "Mistakes were made" and mistakes will be made in the future.

It's complicated, and it's a balancing act. Personally, I think it's the right balance.

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

#110

I think the thing that's missing from much of the discussion is that all released information is subject to a very clear contractual agreement and for specific purposes. The agreements limit the ability to link supplied data with anything else. These contracts and use of data are subject to privacy group oversight, managed by the NHS. The intended use is not that insurance companies can link your medical data against…

"I think that courts, government, the NHS, and UK society at large would come down VERY heavily on any company contravening their contracts." Supposing a leak happened. What makes you think you'll be able to tie it down to a single company? The data could be leaked anonymously, and the risk of such a leak becomes higher the longer this care.data scheme carries on for.

Because the same data set isn't being given to loads of different companies, it is a unique process. The whole concept is you apply for specific data for a reason, get vetted and then receive the data. At the scale we are talking about here the differences between both fields and individual records is going to be so great as to identify almost any leak.
Post reply on HN