NHS App - where did my data go?

[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]

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stuff

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Thanks! That helps

[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]

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.

[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.

[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.

[AtW]

Where is your NHS medical data?

In the U.S.A...

[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.

[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