NHS opt out of your personal data being sold to commercial institution

My concern is it's not very anonymous:
Your date of birth, full postcode, NHS Number and gender

If this info fell into the hands of insurance companies (which I'd bet they would pay VERY handsomely for) they could work out who you are with the above info with hardly any effort at all.
What's to stop a foreign company like Pfizer for example, getting the data for 'research' and accepting a large back hander to hand the data over to some 'fall guy subsidiary' of some insurance conglomerate which will be shut down once the data is out?

I'm all for sharing the data within the NHS for improvement of treatment, but not just to be opted into this, it's all very sinister.

Big Pharma companies hardly have a very ethical track record when it comes to, well most things, really..
 
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Burnsy2023 said:
If the NHS are going to leak data they will do so regardless, this scheme anonymises records which means if it is leaked then you are fairly well protected.
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It is pretty damned easy to circumvent data "anonymisation". Especially data that has been made "anonymous" in such a poor fashion as above.
 
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BunnyKillBot said:
Afaik, they record your age and postcode. There are 10 people living in my post code, and I am the only one my age. Its hardly rocket science.

http://www.nhs.uk/NHSEngland/thenhs...uments/Care.data patient FAQs V4 24022014.pdf


So a log of your age and postcode. Combine that with the electoral register. BOOOM fully identifiable personal information.


Note the guidelines fully admit themselves the information can be identifiable, which negates your point.


So if some pen pushing twonk thinks its 'in the public interest' and its 'oh so very difficult to ask your permission' they will use your identifiable information for some unknown purpose. Combine that with the Overton Window and you have yourself a right mess.
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You've gotten the wrong end of the stick.

The data is already on NHS systems. This process will harvest the information into an encrypted database, which will then anonymise the data and make the anonymised data available

Postcodes and other identifiable information will not be available.

From your link;
Potentially identifiable information: this is information about individual
patients but it does not include any identifiers (i.e. there are no
personal details such as your date of birth and postcode included). We
would never publish this type of information because there is a risk that
you might be identified. For example, if you were the only person in an
area who had a rare disease then someone may work out that it was
you even though your identifiers were not included. As a result, there
are strict controls about how we release potentially identifiable
information. For example, we would only ever release this type of
information to approved organisations for approved purposes, and
there must be a legal contract in place with penalties for any misuse of
the information.
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So "potentially identifiable information" will not be published
 
cheesyboy said:
We would never publish this type of information because there is a risk that you might be identified

we would only ever release this type of information to approved organisations for approved purposes, and there must be a legal contract in place with penalties for any misuse of the information
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Do you honestly not see the contradiction contained in the quote you posted? We would never except where we would only ever. You are sight blind to the 'approved organisations' 'approved purposes' and 'legal penalties'. If the penalty is a fine of £500, and I can make £501, I am quids in. Ironically the same logic described in Fight Club about car recalls :p
 
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I wonder if there's any health correlation with being a tinfoil hat wearer...?

If this data is to be used as an effort towards furthering treatments, the groups not taking part will not be part of the dataset to be studied. Which means, the "tinfoil hat" demographic will be self-selecting themselves out of health study focus.
 
Might not be published, just used to research ways they can control every aspect of our lives.

Public, private, third sector. That's not something you should want.

Plus anyway "approved organization" and "approved purposes" basically amounts to anyone and anything the government sees fit. That is worrying.
 
cheesyboy said:
I wonder if there's any health correlation with being a tinfoil hat wearer...?

If this data is to be used as an effort towards furthering treatments, the groups not taking part will not be part of the dataset to be studied. Which means, the "tinfoil hat" demographic will be self-selecting themselves out of health study focus.
Click to expand...

Ah ok, you don't have any answer. That's ok :).
 
BunnyKillBot said:
Do you honestly not see the contradiction contained in the quote you posted? We would never except where we would only ever.
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No

They're saying NHS will only release your identifiable data if you consent to it. It's not the same data they're talking about. (i.e. they're saying that they will release the data from your currently-existing health record - not this new database since that's not what it's for).
 
This is precisely the reason I refuse to read tobloid newspapers. They fill the ill-informed public with lies and scaremongering.

The amount of grief you get working in primary care now is ridiculous. I can confirm that this data is completely annonomous, and only conditions and medication are being sent to the NHS data centre, which will then be distributed as statistics to help improve standards across the country.

But yeah, carry on, you sign out of this because the "government are selling all your information". And you'll have companies ringing up to let you know they have the best migraine releif treatment available on the market. Stupid people.
 
Without stating the obvious this information can quite easily be targeted back at people - it is far from anonymous. Gender, birth and postcode along with the relevant details is enough to identify most people.

There are better ways of letting medical staff know if you have information they may need in the case of an emergency. Alternatively, they could just keep this information out of private hands altogether now that's a thought ...
 
Surely this type of information being harvested is at least part of the next step of drug and treatment development and it's a total no brainer to do it.

If someone finds my extensive records of broken bones, bone grafts and metal plates useful then let them have it. If it also puts some cash into the pockets of the grossly under funded NHS then all the better.
 
Xordium said:
Without stating the obvious this information can quite easily be targeted back at people - it is far from anonymous. Gender, birth and postcode along with the relevant details is enough to identify most people.

There are better ways of letting medical staff know if you have information they may need in the case of an emergency. Alternatively, they could just keep this information out of private hands altogether now that's a thought ...
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Try not to get all worked up over newspaper headlines. And maybe read the thread

To be clear;

The information released will be anonymised and WILL NOT CONTAIN:
- postcodes
- date of birth
- name
- address
- NI number
- bank account details
- PIN numbers
- your house keys
^ these are all things which won't be in the data given to companies
 
cheesyboy said:
Try not to get all worked up over newspaper headlines. And maybe read the thread
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I have read the thread and I am also very aware of what is going on with this system. Having actually been involved with the actual design of NHS systems I have little to no confidence this will work, keep the extracted information safe, be on budget or even ever delivered.

They will extract that information I detailed they quite clearly state that. If you trust them to keep that information safe then you are naive in my opinion. Moreover, if you think that information will provide anything of benefit to you that can't be obtained by far simpler measures then you are mistake. If you are in an emergency then you aren't going to faff around with looking someone's details up you need to have something on the person - necklace/bracelet etc - because people will act in time critical situations and not wait for some crap NHS computer to spend 5 minutes booting up to then hang at retrieving some information from some poorly designed database that runs on shoddy servers. You don't wait that 5 minutes because when someone pitches up in that kind of situation you don't have 5 minutes.
 
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