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

GS..

So I just had a letter from my GP about sharing my personal information with 3rd parties and whilst I have no problem sharing my information with other medical organisations, my fear is it will be shared by anyone who will pay for it. like https://www.192.com/atoz/people/ share personal information gathered from your government census which you are legally obliged to complete, but only 3 weeks detective work to prevent it being sold to the highest bidders. Hence my posting to consumer rights. Personally I dont rust my GP Surgery (lazy rude receptionists) as far as I can throw them, and even if I fill out the form absolutely for sure they will do nothing about it and probably just throw them all in the bin rather then do any work.

So my question is
Are going to Dissent from secondary use of GP patient records or not bother?
Is there anyway to verify you have submitted a paper form to your surgery dimwits behind the counter or can you complete it online?

elsien

There are valid concerns but you are also scaremongering a little with your reference to 192 and selling to the highest bidder. 

The plan is to have safeguards around the use of the data for health and care planning and research. How it works in practice and how well vetted it will be is yet to be seen, but it’s certainly not there for a bidding war by commercial operators. 

And a link for those who don’t know what you’re talking about:

https://www.healthcareitnews.com/news/emea/privacy-fears-over-nhs-plans-share-gp-medical-records-third-parties

JJ_Egan

What Consumer Rights apply to this ??

oldagetraveller1

I posted the opt out form to my G.P's this morning.

Also completed the NHS opt out online, last week.

Whether my wishes will be honoured, who knows?

I most certainly will not know.

The date has been put back because of privacy concerns, I think.

I have definitely not received any letter from the G.P.. Are they not obliged to inform?

GS..

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. After I wouldn't tell my colleague my age after many attempts, and 3 minutes later she told me where i lived, my wife's name, our birthdays, my sons name and his address from 192, after much research I found out they get this information from your government census and much more research to find out how to stop the government sharing/selling this information, and later to discover this is ignored at each census and you have to go on another investigation to plug it again. The last census we allll had to complete had no box to opt out of information sharing.
I just joined this new surgery after moving into the area, I had to fill out an application which includes the question
TICK THIS BOX TO PERMIT SHARING OF THIS INFORMATION WITH THIRD PARTIES:
I challenged the idiot behind reception about how I do NOT permit sharing of my information, to which she replied "Oh Yeah, we have been asked that loads of time, we need to get the form amended", and after asking what i do about it right now she told me to just write it on the form. NO WAY, ABSOLUTELY NO WAY was that information acknowledge by any meaningful system.
This new form is just a very very amateur letter, no way to complete online (and save Gov ££billions in admin), no method of verification, allllllllllll suggests the whole form is just lip services which will just find its way into the bin.
Scaremongering I dont think. So how about my questions
Are you filling it out? Do you know how to verify you ever did?

elsien

Yeah, I stopped reading when I got to the "idiot behind reception" bit.
Please can you share your research about information sharing from the government census as this is  at odds with the Office for National Statistics data sharing policy.  
Data sharing with the Office for National Statistics - GOV.UK (www.gov.uk)
It is more likely that the information on 192 came from other sources such as the electoral register for those who have not opted out of the open register. 
I'm not disputing there are concerns, but I do like my decisions to be based on a little more evidence. 

JHW1942

elsien said:

Yeah, I stopped reading when I got to the "idiot behind reception" bit.
Please can you share your research about information sharing from the government census as this is  at odds with the Office for National Statistics data sharing policy.  
Data sharing with the Office for National Statistics - GOV.UK (www.gov.uk)
It is more likely that the information on 192 came from other sources such as the electoral register for those who have not opted out of the open register. 
I'm not disputing there are concerns, but I do like my decisions to be based on a little more evidence. 

Quite.  I'm not going to take someone seriously when they're so rude and dismissive about someone just doing their job.

gettingtheresometime

oldagetraveller1 said:

I posted the opt out form to my G.P's this morning.

Also completed the NHS opt out online, last week.

Whether my wishes will be honoured, who knows?

I most certainly will not know.

The date has been put back because of privacy concerns, I think.

I have definitely not received any letter from the G.P.. Are they not obliged to inform?

Listening to an interview the Head of NHS Digital was giving last week, he claimed that posters had gone up in GP surgeries informing patients.
Couldn't help shout at the radio that I doubt many people had visited GP surgeries in the last 15 months and I doubt even further with the amount of posters that are in my GP surgery a)one more would have been noticed or b) it would have been placed in a prominent position.

tacpot12

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.

Manxman_in_exile

I didn't know anything about this until my wife (a lawyer who deals with data protection) mentioned it to me last week.

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.

Having worked in the NHS for 25 years I will certainly be opting out.

PS - when people used to complain about their GPs and surgeries on these boards I usually jumped forward to defend the GPs.  But with my own personal experiences of my surgery over the last 15 months I have begun to realise they are not always as good as I used to think they are, and that some people may be more than justifed in being skeptical about their GPs... 

elsien

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.