[News] Opt out by 23 June to protect your medical history data

[beorhthelm]

Not sure I want insurance companies upping my health premiums so.... I'm OUT.

you mean the same insurance companies for whom you provide health history on application? they have to ask for consent to access medical records, which doesnt change.

 

[Tarpon]

thats a shame as i havent seen a coherent reason to object beyond paranoia. as said in the other thread, i reckon you didnt know your data wasnt shared within NHS. this collation of data will advance medical research, enabling researchers to look for patterns, track improvement or declines in response to treatments. but people will opt out because they simply respond to a negative campaign.

Well one person's coherent reason is always another's paranoia or campaign; I can't be arsed to try and convince anyone of anything much these days, people can rely on their own critical thinking skills. However, this individually identifiable and highly personal data has never been shared with the NHS in this way before and (imho) people should at least know about it to be able to properly consider the pros and cons in order to make an informed decision about something they have a right to exercise some control over. It's really that simple.

 

[beorhthelm]

Well one person's coherent reason is always another's paranoia or campaign; I can't be arsed to try and convince anyone of anything much these days, people can rely on their own critical thinking skills. However, this individually identifiable and highly personal data has never been shared with the NHS in this way before and (imho) people should at least know about it to be able to properly consider the pros and cons in order to make an informed decision about something they have a right to exercise some control over. It's really that simple.

its not individually identifiable, data is pseudonymised. sure you're wanting people to know about pros and cons?

 

[Tarpon]

its not individually identifiable, data is pseudonymised. sure you're wanting people to know about pros and cons?

People can determine their own pros and cons (if they know about the issue and choose to look into it).Strangely, not everyone will agree on these or each other.
At the risk of repeating myself: I can't really be arsed to convince anyone that my personal take is right or wrong or to even really argue about it.
But, just for you, in (very) simple terms:

1. When my entire personal medical history is released by my GP to NHS Digital it will not be anonymous.
2. For a whole raft of reasons, I do not trust or expect NHS Digital to maintain this anonymity in the face of political/commercial pressures and incentives (not to mention incompetence).
3. Therefore I am opting out in an attempt to reduce this risk and protect my personal data from third parties.
4. What others do and think is a matter for them but people should at least know about how and where there personal data is kept and treated.

 

[beorhthelm]

People can determine their own pros and cons (if they know about the issue and choose to look into it).Strangely, not everyone will agree on these or each other.
At the risk of repeating myself: I can't really be arsed to convince anyone that my personal take is right or wrong or to even really argue about it.
But, just for you, in (very) simple terms:

1. When my entire personal medical history is released by my GP to NHS Digital it will not be anonymous.
2. For a whole raft of reasons, I do not trust or expect NHS Digital to maintain this anonymity in the face of political/commercial pressures and incentives (not to mention incompetence).
3. Therefore I am opting out in an attempt to reduce this risk and protect my personal data from third parties.
4. What others do and think is a matter for them but people should at least know about how and where there personal data is kept and treated.

appreciate the reply and giving your view. i wonder though if youre concerned about GP releasing data to 3rd parties in other schemes, or even aware of it?

 

[Tarpon]

appreciate the reply and giving your view. i wonder though if youre concerned about GP releasing data to 3rd parties in other schemes, or even aware of it?

I have previously made data subject access requests to my GP and instructed them that they may only share (headline) data if it is anonymous with the obvious exception of identifiable data / info to inform direct care needs. This was some time ago mind you.

 

[Pickles]

I've just opted out.

However........I've used this exact NHS site 4 times this week, rebooking covid jab plus other current stuff, and all previous times I got autofill from google, including NHS number.

All autofill, as normal, but strangely enough, not on my NHS number......

mmm.....

 

[Westdene Seagull]

FWIW, I'd like to see all our data, medical and social, captured online, albeit anonymised. The advances from information would be sublime. I work in medical research (among other things) and getting representative data to play with is a total bugger.

This. Due to the week I was born in 19 *cough* 70 I'm part of a country wide Cohort Study. Tested every 5 years or so throughout my whole life - medically and academically. In depth investigation of everything I've done and experienced in life. The data is then anonymised and used in medical research, social research and government policy making. But this only covers all the people born in that week. We'd have much better medical services etc if these organisations had access to data on everyone ( anonymised obviously ) rather than just a very small subset. There has been about four Cohort Studies since 1960 so we're talking about a very low number of people taking part. I've seen the reports that are produced, albeit summarised, and what can be deduced is utterly amazing. Therefore, I won't be opting out.

 

[jonnyrovers]

Each to their own of course. You won't be surprised to know that I don't share your confidence or take on the issue. I won't bother rehearsing the alternative interpretation and arguments as they are reasonably well represented amongst various press articles and in the other thread; besides, the purpose of my post was primarily to publicise the issue encourage people to engage and make their own minds up. You can lead a horse to water and all that...

I have to say the debate in this thread has been far more balanced than the 'run for your lives' rhetoric on the other....

 

[BBassic]

I've worked with healthcare data before and, having seen just how anonymised this stuff is, I can't say I'm too concerned.

 

[Sorrel]

I wonder how much individuals opting out will affect the data as a whole? I suspect it will still have a representative sample - but possibly missing people of a more cautious or overly unnecessarily concerned disposition.

 

[Swansman]

FWIW, I'd like to see all our data, medical and social, captured online, albeit anonymised. The advances from information would be sublime. I work in medical research (among other things) and getting representative data to play with is a total bugger.

Yeah in due time we will all be connected to some kind of machine feeding us constant distraction and satisfaction while governments and corporations removes all our so called rights.

 

[FatSuperman]

The data can be un-anonymised according to the NHS own page. And based on the detail here, you simply have to ‘trust’ the government on this. You can each make your own judgement on that part.

Why is this being rushed through with very little information on it, and a difficult opt out? Is it because there is absolutely nothing to worry about, or is it because the gov know it sounds flimsy and just don’t want to bother with the public debate? People here keep saying ‘similar data already available so why worry’... equally, why do this then, if not to shift the goalposts.

Full disclosure, I’m not opting out, but others may be less cavalier than me.

https://www.nhs.uk/your-nhs-data-matters/where-your-choice-does-not-apply/