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

For anyone who has a problem with this, delete your Facebook, Twitter, Google+ and any other social media accounts you have (as if that actually deletes the data). Also, set fire to your PC and any other internet connected devices in order to completely remove tracking cookies and the like.
 
Dimple said:
Apparently (so I'm told) our Trust has excellent online software programs compared to many other Trusts. In another thread one of our members who is an A&E Clinician couldn't believe the data I can get my hands on compared to him in his Trust.
I have access to around 20 different medical programs that all show completely different information and they don't hand it over very easily. I honestly wouldn't be worried about the harvesting of patient data on a huge scale.

I'd love some enterprise level structure come in and put all these programs together in one easy package because it would make my life a lot easier.
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I don't doubt you have a full suite of software, but when you realise the power behind a lot of corporations who are hell bent on cash (not that I blame them), you'll realise they take it to a whole new level! Look at some of the companies and you'll see they have many petabytes in data warehouses already. :)

Whilst I realise its not easily accessible now, the level of changes that are happening make it more than possible in a very short period of time.
 
Dimple said:
Today I made a spreadsheet of 33 patients with all types of data just from NHS Numbers BUT I DO HAVE PERMISSIONS TO DO IT.
You can only get the information if you have the relevant software and the permissions on the right server.
It's laughable to think an insurance company could do this.
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permissions from the patient or on the system?

Also why do you have access to so much patient medical data given you're not medical staff?
 
Tefal said:
Also why do you have access to so much patient medical data given you're not medical staff?
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It's my job.


Tefal said:
permissions from the patient or on the system?
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We have Form Of Authorities from patients/family for 90% of my job.
In the case of audits nothing would happen if we needed consent from every patient, there is obviously a policy somewhere to be able to do this and I'm also passed off at a high level to be able to access all these systems.
 
Dimple said:
You obviously didn't read what you linked to under the UPDATE heading:

PA Consulting has contacted The Reg and told us the data it holds "does not contain patient name, address, NHS number or Date of Birth"

I don't do childish rolleyes
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My apologises about the rolleyes. It was getting late, I was in a bad mood and feeling sarcastic.

I did read my link? The point was that you said this data would be hard to harvest as its all in different systems etc etc. The article demonstrates thats not the case. Its even stored on the internet if you like it or not. On google of all places as well.

As I said before it doesn't matter that the data has no DOB, Name etc. It has an NHS number and other identifying data....end of.
 
Terrier_Jimlad said:
I've worked in NHS IT Infrastructure for almost 10 years, threads like this always make me chuckle, the naivety is quite alarming
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If that is your view after ten years designing and securing infrastructure then.......... its pointless discussing the inherent insecurities of networks, servers, mobile systems, PC's, the stupidity of users with you any further. Would you not agree :p
 
danielanthony said:
For anyone who has a problem with this, delete your Facebook, Twitter, Google+ and any other social media accounts you have (as if that actually deletes the data). Also, set fire to your PC and any other internet connected devices in order to completely remove tracking cookies and the like.
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Your tracked usage and data within those systems are not in the same league as the data held within the NHS and the possible affect on peoples lives it could have.
 
dbmzk1 said:
Don't have a problem with things like this at all. I don't get why people are so paranoid these days.
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Because our government are untrustworthy pieces of scum who deserve to be cut up with an axe and fed to the pigs.

To not trust your government doesn't make you paranoid, it makes you sensible.
 
Burnsy2023 said:
I would highly recommend not opting out of this scheme.

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.

The reason this scheme is so important is that it lets Pharma and research institutions access to a lot of data which they can analyse for new potential treatments and statistical correlations. This could really help research in all areas of heath, and could end up directly benefitting you. The wider the picture, the better the dataset and the more likely we are to cure other illnesses.
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As somebody who works within the field of statistical modelling/predictive analytics - attempting to find correlations between variables (to identify areas which could need further study) I can attest to the value of this kind of data-set. As long as the data is sold to anybody suitable (preventing any one private enterprise from gaining an unfair advantage I see no problem with it, as it additionally adds another revenue stream.

I'm not sure why people are afraid of them using this data to form trends & patterns to target or indirectly 'discriminate' - this already happens across the entire business world already like in the world of car insurance (the only difference is the qualify of the data or the accuracy of the predictive models) - with better data the accuracy improves, as long as these companies are forced to show their methodology & which variables they use (as they are for insurance).
 
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Bash said:
Your tracked usage and data within those systems are not in the same league as the data held within the NHS and the possible affect on peoples lives it could have.
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No? Just your banking details (captured within your browser), the details of all your family and friends, what your interests are, what you've purchased, who you've had physical encounters with, facial recognition software trawling through your on line photos building up a database of known associates. And that's before they even start to look at the information on your credit file and public records.

Private companies knowing you've had a cold is the least of your worries.
 
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elmarko said:
As somebody who works within the field of statistical modelling/predictive analytics - attempting to find correlations between variables (to identify areas which could need further study) I can attest to the value of this kind of data-set.
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And can you tell me how valuable this information will be without individual information. How can they find correlations and hoped for causation without the necessary data. Imparting that necessary data though will lead to disclosure of individuals. Let's not forget the start of epidemiology started when data related to location. They can pass on a useful dataset or an anonymous data set they can't really pass on something that does both.

danielanthony said:
Private companies knowing you've had a cold is the least of your worries.
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Private companies knowing, for example, your wife has a familial history or breast cancer could be a worry though it already is cost punitive for those who seek life insurance.
 
Xordium said:
And can you tell me how valuable this information will be without individual information. How can they find correlations and hoped for causation without the necessary data. Imparting that necessary data though will lead to disclosure of individuals. Let's not forget the start of epidemiology started when data related to location. They can pass on a useful dataset or an anonymous data set they can't really pass on something that does both.
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They're only stripping out identifiable data. You'll still get age, race, sex, past medical history, etc. Address data may be the only useful thing missing, though I suspect an element will remain (first half of postcode, for example)
 
elmarko said:
I'm not sure why people are afraid of them using this data to form trends & patterns to target or indirectly 'discriminate' - this already happens across the entire business world already like in the world of car insurance (the only difference is the qualify of the data or the accuracy of the predictive models) - with better data the accuracy improves, as long as these companies are forced to show their methodology & which variables they use (as they are for insurance).
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because people don't want their insurance or mortgages potentially going up?
 
cheesyboy said:
They're only stripping out identifiable data. You'll still get age, race, sex, past medical history, etc. Address data may be the only useful thing missing, though I suspect an element will remain (first half of postcode, for example)
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Sorry but I still don't the usefulness of this over other means (ie still useful but not as) for the people (naturally the corporations will love it). I don't really think the benefits will be passed onto the people for the problems that may occur. Simple as.
 
Bash said:
As I said before it doesn't matter that the data has no DOB, Name etc. It has an NHS number and other identifying data....end of.
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PA Consulting has contacted The Reg and told us the data it holds "does not contain patient name, address, NHS number or Date of Birth"

Without that lot you really aren't going to get anywhere.
 
On the basis that the NHS will leak the information either way, I'd rather it was sold. No faith in the "anonymous" nature of the data as I don't believe it'll be executed competently.
 
Surely if the complaint that insurance companies with this data will make health insurance more expensive for certain individuals with higher risk. Does that mean the lower risk people in society will have cheaper insurance since now their models will be more accurate and be able to provide savings to people who are far less likely to use the insurance and charge more for the ones more likely. Since the insurance market is generally a very competitive one it is unlikely that one single company would be able to fix a minimum price to a healthy person.

But to worry about this and opt out you should probably also opt out of pretty much every single thing on the internet, from Facebook to even online shopping. Don't use your debit card in a store or nectar card either since they track your shopping habits. In fact if people are so concerned with data held by other parties I recommend quitting your job working only for cash in hand or grow your own food and living off the grid.
 
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