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

Manxman_in_exile

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. 

I have no social media presence (apart from here) and if I Google my name there are no results that relate to me.  I believe I have an almost minimal digital footprint except for essential things (tax, NI etc) and I intend to keep it that way.  I opt out of everything.  (And as the missus is a data protection professional I ask her advice if I'm unsure about anything.  I think her motto is "If ANY doubt, opt-out.")

GS..

Exactly. And all indicators, from the pieces of paper floating around, through to handing them in to your local surgery, point to the fact that our wishes have more chance ending up in the bin than ending up anywhere meaningfultacpot12 said:

NHS Digital have no incentive to ensure that the public are aware of the proposals to use their data. The proposals need more examination to see that there is a regulator who can stop the data being used for purposes other than medical/health research. I don't have a problem with my data being shared for medical/health research, but I don't want other commercial uses to be made of the data.

elsien

GS.. said:

Exactly. And all indicators, from the pieces of paper floating around, through to handing them in to your local surgery, point to the fact that our wishes have more chance ending up in the bin than ending up anywhere meaningfultacpot12 said:

NHS Digital have no incentive to ensure that the public are aware of the proposals to use their data. The proposals need more examination to see that there is a regulator who can stop the data being used for purposes other than medical/health research. I don't have a problem with my data being shared for medical/health research, but I don't want other commercial uses to be made of the data.

So do it online then. 

billn

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.

GS..

There is no online "Dissent from secondary use" paper form. Hence why it's lip service that's going to be totally ignored. Expect your letterbox and inbox to be bombarded with advertising targeting your medical history

elsien said:

GS.. said:

Exactly. And all indicators, from the pieces of paper floating around, through to handing them in to your local surgery, point to the fact that our wishes have more chance ending up in the bin than ending up anywhere meaningfultacpot12 said:

NHS Digital have no incentive to ensure that the public are aware of the proposals to use their data. The proposals need more examination to see that there is a regulator who can stop the data being used for purposes other than medical/health research. I don't have a problem with my data being shared for medical/health research, but I don't want other commercial uses to be made of the data.

So do it online then. 

Manxman_in_exile

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.

...

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

That is one of our concerns too.  Very few digital records of any kind are truly "anonymous" in the sense that they cannot be linked back to individuals.

peter_the_piper

https://csprg.org.uk/hrf_faq/what-are-anonymised-pseudonymised-and-identifiable-data/

Having read this i'm happy for the medical data to be shared.

Sandtree

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.

Zandoni

I think it's best to opt out at the moment, you can easily opt in at a later date if required.

Jenni_D

https://spire.scot/my-choices/

It seems that's how NHS Scotland patients can opt out.