NHS sharing data

ahfat41

Deadline to opt out is 23rd June. Not sure what to do? Interested to know what others will be doing!

Toothsmith

I would question what you read on social media

https://digital.nhs.uk/services/national-data-opt-out/mythbusting-social-media-posts

The common date given is 30th Sept though. Someone else must have changed the thing you read. 

Apollonia

Toothsmith said:

I would question what you read on social media

https://digital.nhs.uk/services/national-data-opt-out/mythbusting-social-media-posts

The common date given is 30th Sept though. Someone else must have changed the thing you read. 

There are two different data sharing plans, one of which has an opt-out deadline of 23 June. 
From NHS digital

If you do not want your GP to share your identifiable patient data for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out. This prevents your data being shared with NHS Digital if you register your opt-out before 23 June 2021. You can still register your opt-out at any time after this date and it will prevent any more data being shared with NHS Digital.
You can also register a National Data Opt-out, which will prevent NHS Digital from sharing your identifiable patient data for planning and research purposes. Your individual care will not be affected if you opt-out using either option.

Type 1 Opt-out is new and data harvesting will start on 1st July.

Spoonie_Turtle

Apollonia said:

Toothsmith said:

I would question what you read on social media

https://digital.nhs.uk/services/national-data-opt-out/mythbusting-social-media-posts

The common date given is 30th Sept though. Someone else must have changed the thing you read. 

There are two different data sharing plans, one of which has an opt-out deadline of 23 June. 
From NHS digital

If you do not want your GP to share your identifiable patient data for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out. This prevents your data being shared with NHS Digital if you register your opt-out before 23 June 2021. You can still register your opt-out at any time after this date and it will prevent any more data being shared with NHS Digital.
You can also register a National Data Opt-out, which will prevent NHS Digital from sharing your identifiable patient data for planning and research purposes. Your individual care will not be affected if you opt-out using either option.

Type 1 Opt-out is new and data harvesting will start on 1st July.

That's a useful web page, thanks - I didn't know about any of this.

Some context for 'identifiable patient data':

"We do not collect patients’ names or exactly where they live. Any other data that could directly identify someone, for example their NHS number, full postcode and date of birth, is pseudonymised before it leaves their GP practice. This means that this data is replaced with unique codes so patients cannot be directly identified in the data which is shared with us. The data is also securely encrypted.

We would only ever re-identify the data if there was a lawful reason to do so and it would need to be compliant with data protection law. For example, a patient may have agreed to take part in a research project or clinical trial and has already provided consent to their data being shared with the researchers for this purpose."

tacpot12

The fact that new system is called General Practice Data for Planning and Research (GPDPR) is an example of mal-administration of the highest order. Who on earth thought that was a good name for a data management system? 

Toothsmith

Sorry about my first post above - I had no idea about this either, and when I tried checking it out - that subject was all I found.

My thoughts about NHS sharing data are that if the State is paying for a universal health care system, then it has the right to use anonymised data in order to help plan it and run it as cost efficiently as it can. All that's being talked about is anonymised data, so I don't feel objecting to it's use is reasonable.

tacpot12

I also don't feel it is unreasonable for the state to have access to my health data for planning purposes, but I'm not sure I want the state to be able to sell my data to commercial organisations, even if pseudonymised. While the money that is raised might be used to pay for useful services, the commercial organisations will have to raise the money from somewhere, and we all know who ultimately ends up paying the bill - you and I!

I might accept that argument that selling this data is the best way to get the benefit of the data fed back into the NHS, but this argument is one for the politicians to make, not me.

Spoonie_Turtle

If you read the page, I'm certain it says they will never sell your data.

mad_spaniel

That link says to approach the GP surgery to opt out. I did this yesterday, only to be told it wasn't their job . |I was  given a NHS link to register but dont know if this is correct. Apparently conflicting advice. I have emailed the GP to ask them which is correct. 

mad_spaniel

Make your choice about sharing data from your health records - NHS (www.nhs.uk) allows for email opt out

ahfat41

mad_spaniel said:

That link says to approach the GP surgery to opt out. I did this yesterday, only to be told it wasn't their job . |I was  given a NHS link to register but dont know if this is correct. Apparently conflicting advice. I have emailed the GP to ask them which is correct. 

I have phoned my gp and receptionist said I could opt out on the phone. I find it strange as I thought I needed to fill a form with signature. I have emailed NHS digital for clarification as I thought the form needed a signature.