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NHS patient data to be made available for sale to drug and insurance firms

theguardian.com

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Re: NHS patient data to be made available for sale to drug and insurance firms

#51

Post by plg »

re: the risk of insurance companies using the data to reconstruct identities: Mark Davies, the centre's public assurance director says "I think it is a small, theoretical risk"

this guy is either (a) a liar or (b) horribly naive or (c) misinformed by his experts (or all of the above)

Even if the data are "pseudonymised", if they still contain age, gender, ethnicity, postal code, and even a small smattering of medical info (or other info) then it's pretty much a done deal to link the records back to a person.

Think of it this way as well : even if they can "only" narrow down a given record to 100 people, so what? They just treat those 100 people the same (i.e. poorly).

This sets a horrible precedent. One's medical records ought to be one's personal, private property, and any release of such ought to be with the express permission of the owner (i.e. the patient).

Re: NHS patient data to be made available for sale to drug and insurance firms

#52

Post by walshemj »

nodata wrote: post #2

"The extracted information will contain NHS numbers, date of birth, postcode, ethnicity and gender." Yikes! Date of birth AND postcode? Pseudoanonymous that is not.

and the NHS Number should never be disclosed its effectively the equivalent of your social security number or ni number it's what the NHS uses to track you in the system.

Its why every test you do in the NHS is tagged with your NHS number

Re: NHS patient data to be made available for sale to drug and insurance firms

#53

Post by VLM »

tomp wrote: post #17
ealexhudson wrote: post #12

This is mostly a good thing. The NHS is of course a huge trove of valuable information, but there are some incredibly compelling reasons to make it available to anyone who can improve patient care - start-ups should be interested in this too.

In an ideal society, I totally agree. However, in today's world, such data will mostly be exploited by health insurance companies, credit rating agencies, employers, and paparazzi. Unless, of course, the government(s) pass laws that protect the rights of the people and limit the influence of the industry, but that is rather the opposite of what has been happening recently.

I'm surprised no one has mentioned the most obvious exploitation: politicians. If you could just vote for my proposal, or perhaps send me some money, I could arrange for no one to find out about ...

Company execs are about the same way. So you earn 100K pounds per year and someone wants 1K pounds to keep something quiet that could derail your career. Well, OK then. As long as it doesn't scale to 100 people all trying to blackmail the same guy. Or if you could just sign this sale contract with our company, we'd have no reason to explain to our shareholders all about your mental health issues 30 years ago that obviously cost us the contract.

Re: NHS patient data to be made available for sale to drug and insurance firms

#55

Post by mrich »

Angostura wrote: post #48
xedarius wrote: post #42

This information will only be used to cause harm and bring misery to people when they need help the most. I have private medical insurance through my work. Last year I made two claims, which were covered by the insurance company. However after the second claim they sent me a letter requesting access to my medical records. Obviously I told them to fuck off as they're an insurance company and have no business poking th…

This information could invaluable to the medical research community as a whole and shouldnt have any adverse consequences for individual patients if suitably anonymised. Currently I don't have sufficient information to judge whether I need to opt out or not so I'm withholding judgemeny.

Making that data truly anonymous so that you cannot de-anonymize it with other data sets is likely impossible. You would have to remove so much that the data becomes useless.

Re: NHS patient data to be made available for sale to drug and insurance firms

#56

Post by koshatnik »

DanBC wrote: post #33
nodata wrote: post #2

"The extracted information will contain NHS numbers, date of birth, postcode, ethnicity and gender." Yikes! Date of birth AND postcode? Pseudoanonymous that is not.

Including the NHS number is bad too. It's a great shame that the information sharing systems are so bad because all that medical information is potentially very useful. While anonymising data is hard things like including postcodes and NHS numbers is just stupid. Don't forget this change is just about GP data, hospital data has been allowed to be shared for a while.

Not sure about the identifier used in England and Wales, but in Scotland most boards use the 10-digit CHI number. From this you can determine the patient's date of birth and sex.

For this reason it is not used as a patient identifier for information visible beyond staff cleared to view this personal information. Either data is aggregated to a point where it's not individually identifiable or an anonymised ID is used, and the most distinctive fields removed. I hope that's what's happening here!

Re: NHS patient data to be made available for sale to drug and insurance firms

#57

Post by TomLTomL »

Information on how to opt out here: http://medconfidential.org/how-to-opt-out/

38 degrees petition here: https://you.38degrees.org.uk/petitions/prevent-the-sale-of-n...

Further information here: http://www.care-data.info/

Epetitions (official govt site) petition here: http://epetitions.direct.gov.uk/petitions/53994

Re: NHS patient data to be made available for sale to drug and insurance firms

#58

Post by mistakoala »

arethuza wrote: post #36
michaelt wrote: post #34

Earlier quoted context omitted.

Several insurance companies will pay a cash incentive to use NHS services rather than claiming on your insurance [1]. For example if you need to stay over night in hospital and choose an NHS hospital instead of a private one they will give you £50 or more per night. [1] https://www.google.co.uk/search?q="NHS+cash+benefits"

Nice - my employers private health care insurance includes this and I had never noticed! Mind you I wonder when it would ever apply - if you have a non-emergency then you will choose to go to a private hospital, if it is an emergency then you don't have any option but to go to an NHS hospital... Maybe for people who are covered by private health care but aren't close enough to a private hospital to actually use it?

It's presumably the incentive of not using non-NHS facilities (which the insurance company would have to pay for as part of your cover). £50 to stay in an NHS ward vs a bit more to stay in an en-suite room in a private hospital.

If I had insurance, I know for sure which I would be choosing.

Re: NHS patient data to be made available for sale to drug and insurance firms

#59

Post by kevcampb »

I read this article and was astounded there wasn't a massive outcry about this. Then I dug around some more and it seems the guardian article is really quite misleading.

There is a Health Service Journal article at http://www.hsj.co.uk/comment/more-patient-data-ultimately-me... which gives more details.

The "pseudonymised data" is also referred to "amber data" and does not contain the postcode, DoB or NHS number of the patients.

The "red data" which contains this additional information is not available to 3rd parties except in exceptional circumstances - eg: a national emergency with an outbreak of some deadly disease where the government is trying to contain it.

Re: NHS patient data to be made available for sale to drug and insurance firms

#60

Post by blueskin_ »

Angostura wrote: post #48
xedarius wrote: post #42

This information will only be used to cause harm and bring misery to people when they need help the most. I have private medical insurance through my work. Last year I made two claims, which were covered by the insurance company. However after the second claim they sent me a letter requesting access to my medical records. Obviously I told them to fuck off as they're an insurance company and have no business poking th…

This information could invaluable to the medical research community as a whole and shouldnt have any adverse consequences for individual patients if suitably anonymised. Currently I don't have sufficient information to judge whether I need to opt out or not so I'm withholding judgemeny.

You can never properly anonymise data.
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