“Anonymized” data really isn’t — and here’s why... And UK "care.data" NHS data release

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Message 1464822 - Posted: 16 Jan 2014, 0:09:17 UTC
Last modified: 16 Jan 2014, 0:09:39 UTC

Here's an old article that should be of great interest to those in the UK at the moment:


“Anonymized” data really isn’t — and here’s why...


IT is what we allow it to be...
Martin
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Message 1465038 - Posted: 16 Jan 2014, 14:51:23 UTC - in response to Message 1464994.  

Companies continue to store and sometimes release vast databases of " …

by Nate Anderson - Sept 8 2009, 12:25pm GMTDT

Because it is over 4 years old, why should it be of interest?

Are you not in the UK?

Have you not received a blue and green junk mailing from the NHS?

Note from that article:

At the time GIC released the data, William Weld, then Governor of Massachusetts, assured the public that GIC had protected patient privacy by deleting identifiers. In response, then-graduate student Sweeney started hunting for the Governor’s hospital records in the GIC data. ... For twenty dollars, she purchased the complete voter rolls from the city of Cambridge, a database containing, among other things... By combining this [public] data with the GIC records, Sweeney found Governor Weld with ease... In a theatrical flourish, Dr. Sweeney sent the Governor’s health records (which included diagnoses and prescriptions) to his office.


Have you ever played the game in school of who shares their birth dates in a class?...


And... What people are automatically excluded from the NHS data release?


?

It's your data. It's your life...
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Message 1465059 - Posted: 16 Jan 2014, 15:35:47 UTC - in response to Message 1465050.  
Last modified: 16 Jan 2014, 15:39:10 UTC

Are you not in the UK?

Yes.

OK. Do you consider yourself a well informed citizen and alert to the ways of the world and current affairs?


Have you not received a blue and green junk mailing from the NHS?

No.

You should do 'soon', or you've lost it in the junk.


Have you ever played the game in school of who shares their birth dates in a class?...

Not that I can recall.

Given a class of 30 students, typically you'll have no more two or three that share a birthday. More significantly, you have the other 27 or 28 that do not share a birthday. (Special exception if there are any twins etc!)


It's your data. It's your life...

Which is why we have the Data Protection Act 1988 DPA 1988. Are you saying it has been compromised?

Very good.

Now reread that old article from 2009 and joint the dots.


See also more recently:

Your life in their hands...

Within the next few weeks, everyone living in England will see a little white and blue leaflet from the NHS land on their welcome mat.

Under the heading “Better information means better care”, this innocuous piece of paper will outline...




It's your life...
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Message 1465129 - Posted: 16 Jan 2014, 18:49:48 UTC - in response to Message 1465077.  
Last modified: 16 Jan 2014, 18:53:21 UTC

OK. Do you consider yourself a well informed citizen and alert to the ways of the world and current affairs?

Pretty much so yes.

Yet you are unaware of this one...


You should do 'soon', or you've lost it in the junk.

We will see, and no.

Don't worry, the wording is very carefully crafted to keep you unaware and fuzzily feeling that all is good and for the good of whatever fuzzily it might be about...


Given a class of 30 students, typically you'll have no more two or three that share a birthday. More significantly, you have the other 27 or 28 that do not share a birthday. (Special exception if there are any twins etc!)

As a retired teacher there are many ways of having "ice breakers" with a new class. That is not usually seen as one of them because it asks personal information to soon for most peoples comfort.

"... it asks personal information ... for most peoples comfort."

Interesting note.


... So what is all this about? It is abot a Government scheme to centralise all GP's patient data in a national database. The idea being that if anyone has a serious accident away from home and ends up in intensive care, the doctors treating them can call up instantly their medical records that will show what they are being treated for, what medication they are on, and what allergies they have.

That is the excuse. In reality, if you have any such conditions, then you wear a "medical bracelet". For any 'emergency', no medical doctor would rely upon or have the time to rely upon such a central medical database.

There is your "Summary Care Record" which GPs use which is something quite different and I believe is under the control of your GP.


As it says on the front of the information leaflets, which will be sent to every household in England in January, “you have a choice” about whether to allow your data to leave the GP surgery

Oh, so there is a safeguard then?

Yes, but only if you know about it and proactively check for yourself.

Automatically, the default is that your medical data is to be sent to a central database outside of the control of your GP (and yourself).

You should be concerned about whether you yourself can trust how your personal medical data is used and whether you can trust that whatever promises of "anonymity" are plausible when your data can be cross-referenced against other readily accessible databases that various "3rd parties" hold and sell.


But it has also been condemned as a government-backed intrusion into our privacy on an unprecedented scale. For the first time, information about the private things we discuss with our GP will be – with some exceptions – held in a national database, alongside our NHS number, date of birth, postcode and gender.

But of course, half of that is already held on other databases including the electoral register, which is open at Town Halls to public view. Then when anyone moves their medical records are transferred to their new doctor or medical practice as a matter of course. This is just another attack by the country's left wingers on what they see as Government big brother...

Are you really so virtuous and naive that you have nothing to hide from Big Business? Warts 'n' family 'n' all?...


It's your life,
Martin
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Message 1465252 - Posted: 17 Jan 2014, 1:01:27 UTC - in response to Message 1465149.  
Last modified: 17 Jan 2014, 1:23:35 UTC

You should be concerned about whether you yourself can trust how your personal medical data is used and whether you can trust that whatever promises of "anonymity" are plausible when your data can be cross-referenced against other readily accessible databases that various "3rd parties" hold and sell.

Should I? In your opinion I assume, and by your standards not mine.

Are you really so virtuous and naive that you have nothing to hide from Big Business? Warts 'n' family 'n' all?...

I am boringly normal I'm afraid, so yes. ...


You really are boring enough to not be in the least bit worried for what Marketing/fraudsters/whoever will find/assume/make-up and direct to you from:

... By combining this [public] data with the GIC records, Sweeney found Governor Weld with ease... In a theatrical flourish, Dr. Sweeney sent the Governor’s health records (which included diagnoses and prescriptions) to his office.

?


It's your life,

Yes it is, so kindly stop telling me how to live it.

You can dream your desert island retirement utopia.

For myself, I much prefer that Big Business is not given any chance to direct how I spend my life or how I spend my own money, especially so for the very intrusive and personal "data mining" that might be made with what I believe will soon be available trivially personally identifiable personal medical data! That is: Your health records.


Your choice.

Check the details with your GP this month... Once your data is released, you have no opportunity to unrelease what has already been released.

It's your life,
Martin
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Message 1465256 - Posted: 17 Jan 2014, 1:15:47 UTC
Last modified: 17 Jan 2014, 1:17:45 UTC

From the sample of one here, it looks like the 'new rules' for access to Personally Confidential Data for personal medical records in the UK are going to slip in by default with most of the public dreamily unaware of the full details...

I wonder who and how many 'notables' have been automatically opted-out rather than the default opted-in for the masses?...


It's your life...
Martin
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Message 1465377 - Posted: 17 Jan 2014, 13:30:41 UTC

There is nothing in my medical records that i'm worried about.
They'll show that i was a bit clumsy in my youth, though i've never yet broken a bone. I had a kidney removed when i was two and a growth removed from my Achilles tendon when i was eighteen. I'm up to date with all my vaccinations. I tend to drink a little more than recommended. I have a family history of type-2 diabetes. I have a BMI of 33 (because that scale doesn't account for muscle density). I was part of a bird-flu vaccination study in 2008/9. I have blood pressure of 85/60 and a resting heart rate of 45, which sometimes concerns doctors for being a bit low, but it's always been like that and hasn't done me any harm yet.
All of which i'll happily tell anyone who asks.
What am i meant to be concerned about?
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Message 1465478 - Posted: 17 Jan 2014, 18:23:32 UTC

So long as you are breathing in and out, and your heart keeps pumping regularly enough to stop bits dropping off not a lot.
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Message 1465538 - Posted: 17 Jan 2014, 21:19:59 UTC - in response to Message 1465256.  

I have 'opted out'. The Government, security and confidential are words that just don't fit together easily in any sentence. I don't trust this government any more than I trusted the last and I trust big business, even less! There is also an aspect to this issue that may not have been considered....yet. Do you trust your doctor?
Don't take life too seriously, as you'll never come out of it alive!
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Message 1465670 - Posted: 18 Jan 2014, 8:19:29 UTC - in response to Message 1465538.  

I have 'opted out'. The Government, security and confidential are words that just don't fit together easily in any sentence. I don't trust this government any more than I trusted the last and I trust big business, even less! There is also an aspect to this issue that may not have been considered....yet. Do you trust your doctor?

I dont think that it is just on your side of the pond either. There is a big push to digitalize all medical records over here. The reason given is that incase your out of town or state so that they can get your medical recordsif you need medical help. I bet the insurance companys are just chomping at the bit for that. Obama care says you cant be denied coverage for prior exsisting aliments, But Im betting we will have customized life insurance policys.
laugh now but waite untill you have to have a mandatory DNA genome study done on you.
Back when I was in my fortys I was envious of the kids being born, For what marvels they might see in their future. Now that im 61, Im downright worried that they will be the ones who live in fear of there own governtment.
[/quote]

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Message 1466650 - Posted: 20 Jan 2014, 14:44:07 UTC - in response to Message 1465702.  
Last modified: 20 Jan 2014, 14:44:23 UTC

If I had a number of medical issues, I could well be interested to get a copy of my medical records and download them to a USB stick which I would carry with me at all times. If I went on holiday and had a serious illness or accident I would want those treating me not to make things any worse by giving inappropriate treatment.

My parents have something a bit like that. They both wear SOS Talismans, little wrist bracelets with a pull-out strip of paper listing everything that medical services would want to know, like my father being diabetic and my mother wearing contact lenses.
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Message 1489136 - Posted: 15 Mar 2014, 1:24:00 UTC
Last modified: 15 Mar 2014, 1:24:18 UTC

For all those unconcerned about their medical records and who they might be sold to... Are you still unconcerned?


Scam emails sent telling people they have cancer

Sick fraudsters have put out a batch of hoax emails falsely warning recipients that they may have cancer.

The scam emails purport to come from the UK National Institute for Health and Care Excellence (Nice). The emails - which arrive with the header "important blood analysis result" - ask prospective victims to download and print out “test results”...



Boffins propose brainwave privacy standard

EEG data can predict illness, and ...makers are storing it in the cloud

...raised the issue of “Privacy for Personal Neuroinformatics”, a field they feel deserves attention because brainwave data is starting to go public.

... electroencephalography (EEG) has been around for ages and records brain activity using electrodes. Patients generally consent to EEG data being captured, often because it's a useful diagnostic tool. But EEG data can also be used to “diagnose mental diseases, and traces of epilepsy, and decode personality traits,” ... current arrangements mean patients don't consent to or contemplate deeper analysis. Nor can patients control the output of their minds: a test for one condition will produce data useful for other purposes.

Most EEG data, ... is held by medical organisations who are careful about privacy, but...




Or just too sheltered or naive to care?

IT is what we allow it to be...
Martin
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Message boards : Politics : “Anonymized” data really isn’t — and here’s why... And UK "care.data" NHS data release


 
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