Metropol

Are people aware of the NHS Digital plan to share patient data?

We have until June 23rd to opt out if we don't want our data shared.

Guardian article on the plan: https://www.theguardian.com/society/202 ... es-england

More info about opting out: https://medconfidential.org/how-to-opt-out/

Neil wrote: ↑Mon 31 May, 2021 18.12 Are people aware of the NHS Digital plan to share patient data?

We have until June 23rd to opt out if we don't want our data shared.

Guardian article on the plan: https://www.theguardian.com/society/202 ... es-england

More info about opting out: https://medconfidential.org/how-to-opt-out/

I’m not particularly savvy with stuff like this. We’re assured that data will be anonymous - if so what’s the issue?

I have to say I wasn't particularly aware of this and having looked into it, nor am I particularly bothered but absolutely if you don't want your data shared you should be able to exercise that right.

Yet considering how online-y and app-y the world has got which has only been accelerated over the past year the best that can be offered to people wishing to opt out is to print a paper form and take it to their local surgery? There is no option to do this within the NHS app without having to bother the surgery? And even if the form is filled out and delivered on time exactly what guarantee is there that the it will be processed within the very short time frame before the data is due to be collated? Or indeed what guarantee is there that the surgery has any idea whatsoever what to do with it and it doesn't end up just getting passed through a succession of in trays before being discarded several months later?

And even if the forms are processed in time to prevent someone's personal data being used against their wishes, who exactly is implementing this? Seems to me like it will just be done by already over-worked surgery staff.

If NHS Digital are priding themselves on delivering this mass data collation whilst claiming to respect the right to opt out then part of it should have been delivering something significantly better than this to exercise that right.

They provided an online opt-out last time this idea came up, unfortunately it was extremely popular and they were basically forced to admit the idea was bad.

Fast forward a few years and the same idea comes back, with a couple of extra restrictions on the use of the data and a much harder to use opt-out mechanism. Cue claims that the changes they've made have given them much more support because far fewer people are completing the opt-out.

all new Phil wrote: ↑Tue 01 Jun, 2021 20.44 I’m not particularly savvy with stuff like this. We’re assured that data will be anonymous - if so what’s the issue?

I've read several reports that it will be incredibly easy to deanonymise the data.

Groups of GPs are campaigning against this sharing, partly on these grounds.

https://www.theguardian.com/commentisfr ... ds-england

Have to say it's a very worrying development. I don't want my personal medical information to be available to god knows who. I've opted out electronically already.