Reply to: NHS App - where did my data go?

[ladymuck]

Where is your NHS medical data?

In the U.S.A...

I was going to say better than China but it probably ends up there eventually

[Gibbon]

I do wonder why they use consultants to deliver the news, a trained counsellor would be a better bet ,equip them with the treatment plan and notes. Keep the consultant for the expert stuff.

No they wouldn't, having been in that predicament twice (not terminal, but seriously life threatening), having the expert on hand to ask questions and usually talk through the different options is preferable to someone with a script, think 111, in this situation. I had some quite bespoke stuff done a couple of times which sometimes pulls in other consultants.

[AtW]

Where is your NHS medical data?

In the U.S.A...

[vetran]

never underestimate DR GOOGLE people will search for the text in the result.

But you would sort of expect the tool to have a publishing approval process so the fact the test result is back would be published but the content would redirect you to your consultant.

I do wonder why they use consultants to deliver the news, a trained counsellor would be a better bet ,equip them with the treatment plan and notes. Keep the consultant for the expert stuff.

[vetran]

A test result is not a diagnosis. Most people would not know if result is good or bad without the doctor / consultant explaining it in the context of whatever it is they're investigating.

never underestimate DR GOOGLE people will search for the text in the result.

But you would sort of expect the tool to have a publishing approval process so the fact the test result is back would be published but the content would redirect you to your consultant.

[ladymuck]

A test result is not a diagnosis. Most people would not know if result is good or bad without the doctor / consultant explaining it in the context of whatever it is they're investigating.

[SueEllen]

Imagine the situation, you got for a blood test, your results are shown in your app saying you have terminal cancer before a consultant can break it to you in a more sesntive way.

That's unlikely as a hospital also controls what data you and your GP practice can see on you.

I think you mean that the GP allows data from a blood test that indicates you have cancer to go on the app before they speak to you and urgently refer you to a consultant.

[ladymuck]

...

stuff

...

Thanks! That helps

[SimonMac]

As serious answer would be useful but I do know the perils of General

So, there is no such thing as the NHS. There is a myriad of trusts and private companies. All GPS are independant practices, some group together.

The primary owner of your data is your GP. All other system get a copy of this data. The amount of data shared varies for reasons I won't go into. Each GP signs up to one of the GP Connect service proviers, TPP and EMIS being the two biggest. These providers will sync data back to the "NHS Spine" run by NHS Digital, and as it name suggests is the backbone of moving data around.

The all the required information sent back to NHS Digital is the Summary Care Record, this is a very basic as the name suggests summary of the data

• current medication

• allergies and details of any previous bad reactions to medicines

• the name, address, date of birth and NHS number of the patient

That is it, that is the bare minimum sent back and aviable to all across the NHS. There is a push to get other information included called Additional Information and this includes

• reason for medication

• significant medical history (past and present)

• significant procedures (past and present)

• anticipatory care information – such as information about the management of long-term conditions

• communication preferences

• end of life care information

• immunisations

• coronavirus (COVID-19) related information

• accessible information requirements

• carers' details

• lasting power of attorney

• information to help provide reasonable adjustments required under the Equality Act (2010)

But this is voluentary, and practices can opt in or out of sharing this. So if you have moved to a practice that goes from say EMIS to TPP that is why the informatiuon is not there. Or the practice has chosen not to share this additional inforamtion.

In answer to Mal's "its your personal data, on what basis are they refusing to let you access it?"

He is correct, it is your data and you can request it be sent to you. The GP is more than entitled to control how they provide that data to you. Ask for it and it will be a load of files and information as a raw dump, data that is shared to you via a third party like the NHS App is more than controlled.

Imagine the situation, you got for a blood test, your results are shown in your app saying you have terminal cancer before a consultant can break it to you in a more sesntive way.

[ladymuck]

Are you after serious answers or has general gave you what you need?

As serious answer would be useful but I do know the perils of General

[SimonMac]

As some here have worked within the NHS digital area, perhaps some light can be shed...

I have just changed GPs, on account of moving house. I used to be able to see all my test results and other gubbins on the NHS App. Since changing GPs and having to re-register for the NHS App, all that data is gone. I now can't double check when I last had a smear test, or what my cholesterol was when I had blood test, etc.

Is this expected functionality? That the only data you see is what has been input by your current GP?

Are you after serious answers or has general gave you what you need?

[Gibbon]

That doesn't really answer the question as to where all my data have gone.

Could it re-register is short hand for delete 'old' create 'new'. Or are you in a different NHS area. I live on the Leeds and Wakefield NHS border. They can't see results from each other, I have to be careful where I get my blood tests done. This is my guess and also explains why you can get a paper copy.

[d000hg]

I thought everyone on here would have Private Medical.

Also NHS and app sounds like 'r#p

THe app is meant to be quite good, this problem seems to be more about whatever nonsense is happening either on the back-end, or through human incompetence at the local GP. My money leans to the latter.

[ladymuck]

I found a web page to raise a query with the team so will see what they come back with.

This is what they said:

"When switching GP surgery, your medical record is sent electronically from your old GP surgery to your newly registered surgery.
Once your record has been received by your newly registered surgery it may take up to one week for your record to be updated to reflect your new GP surgery registration.
We would suggest waiting at least one week from your change of GP surgery for this change to be reflected within the NHS account.
If this time period has passed and you are still not seeing details of your new GP surgery, please raise this with them so they can check that your record has been fully received and updated to reflect your change of surgery."

That doesn't really answer the question as to where all my data have gone.

[ladymuck]

Out of interest, why did you have to re-register for the NHS App - surely you just add you new GP surgery to the existing account?

You'd think.

I sent all the paperwork the new surgery wanted and received sporadic emails that suggested registration in progress. I tried to log into my NHS App to look at something and was told that because something in my record had changed, I had to re-register. That really only meant reconfirming my NHS number and DoB. I then received an email a few days later to say that my NHS App was now ready for use which is when I discovered all the data was gone.