Are going to Dissent from secondary use of your GP patient records or not bother?

Ectophile

Sandtree said:

billn said:

Manxman_in_exile said:

We haven't received any notifiction from our GP surgery (or any other NHS body) and when I attended my surgery for an appointment yesterday they had no opt-out forms.  I'm not sure they even knew what I was talking about.

I had the same at my surgery last week, I asked the receptionist about this and they didn't have a clue, the practice manager said he could vaguely remember hearing something. As far as I can see you have to opt-out from both the surgery and online.

My concern is that the information is not anonymous but "pseudonymised" (not my word) so could be reversed and the patient identified.

Pseudonymised does not mean that it can be reversed. It means that if I look at the data, eg a GPs appointments over the month, I can tell if their 9am appointment is with the same person as their 1pm appointment. I cannot necessarily tell anything else about that person (or two persons). 

Personally, I think far more good can come out of data analysis by the NHS than harm. I already receive umpteen phishing/marketing emails, calls and text a month from various commercial data breaches etc that even if there was a tiny number of wrong decisions made on my NHS data that it would really move the needle.

But pseudonymous data can be reversed if you have enough of it.  You may be able to work out which people did what on particular dates from their social media, and then link that to one specific medical record.  De-anonymising has been done before.

Many years ago AOL decided that it would be useful to researchers to publish lists of all the things people searched for on the internet.  All the user names were stripped out and replaced with meaningless user IDs.  Researchers found that the things that people search for tend to be specific to them, and where they live.  In several cases, they managed to work out who a user was, given nothing but what that user searched for.

If the data was to be used only by the NHS for the NHS, I wouldn't be so worried.  But the intention is that it will be passed on to researchers and drug companies for their benefit.  At that point, the NHS will lose any control of the data.

Sandtree

Ectophile said:
But pseudonymous data can be reversed if you have enough of it.  You may be able to work out which people did what on particular dates from their social media, and then link that to one specific medical record.  De-anonymising has been done before.

Its certainly not impossible in all circumstance however would require a fairly significant amount of personal data to already be in the public domain such as exact times and dates of doctors appointments, medical conditions etc. Even then you can only identify those people that post that information you wouldnt be able to workout who any other records are.

Obviously you can be the type that overshares and posts regularly about their cancer, diabetes and heart conditions in intermate detail on public forums and just because you do that doesnt mean a company should be able to also see that you have gonorrhoea but for the majority of us who don't overshare the risk is exceptionally low. 

Ectophile

Sandtree said:

Ectophile said:
But pseudonymous data can be reversed if you have enough of it.  You may be able to work out which people did what on particular dates from their social media, and then link that to one specific medical record.  De-anonymising has been done before.

Its certainly not impossible in all circumstance however would require a fairly significant amount of personal data to already be in the public domain such as exact times and dates of doctors appointments, medical conditions etc. Even then you can only identify those people that post that information you wouldnt be able to workout who any other records are.

Obviously you can be the type that overshares and posts regularly about their cancer, diabetes and heart conditions in intermate detail on public forums and just because you do that doesnt mean a company should be able to also see that you have gonorrhoea but for the majority of us who don't overshare the risk is exceptionally low. 

You don't need to over-share data.  People only need to deduce enough data about where you've been and when you visited the doctor to uniquely link a specific medical record with a real named person.  Lots of people visit the doctor on any given day.  But if they can work out that you visited a particular doctor on two or three specific dates, then there is probably only one medical record that has those appointment dates.

Jumblebumble

GS.. said:

For sure this is not scaremongering. I hate wacky conspiracy theorists BUT, The DVLA openly admit illegally selling car driver information for year after year but refuse to stop doing it. 

What Driver information do you believe the DVLA sell illegally ?
This may help 
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/861052/inf266-release-of-information-from-dvlas-registers.pdf

oldagetraveller1

I wonder why the default isn't everyone is deemed to be opted out and may then choose to opt in if they so wish?

Just saying!

GS..

Is this online form the same as the paper one floating around?

It seems to cover the same permissions

elsien said:

There is an online opt in/out for those who are aware and are willing to use the online portal.
National data opt-out - NHS Digital
Although, tbh honest, the amount of stuff that gets put by some people on social media, everything including the inside leg measurement is already out there anyway. 

derrick

I read on this thread that people are filling in and sending a hard copy to their GP, but after filling out answers to questions,(no form),and submitting it just says "your choice has been made".

Is this sufficient or can some one point me to the form?

.

Sianbez

From what I understand there are 2 opt outs.

There's the online opt out which you can complete online and then there's a Type 1 opt out form which you should print,complete and then take to your GP surgery.

There is a difference between the 2,it's to do with who they share you data with, but to be honest I can't explain the details,I find it a bit confusing.
But if you want to opt out of data sharing you need to do both.

Your GP can still share essential health information when needed for your healthcare so it doesn't affect your health treatments,hospital appointments etc

The deadline for the Type 1 opt out form has been extended until 1st September.
There is a link on the nhs page below for the form if anyone wants it,they haven't made it easy to find.
Some GP surgeries are also putting them on their websites for patients to print off at home.

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice

Hope that's useful.