Govt/NHS Digital plan to share patient data

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: GPs warn over plans to share patient data with third parties in England | GPs | The Guardian

More info about opting out: How to opt out | medConfidential

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This is utterley disgraceful on the gov part.

I am currently between surgery registrations I’m not sure where I’d begin trying to opt out.

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The hospital bit you can do anyway.

Are you in the process of registering to a new doctor? If so, I’d be tempted to send the form to both the old and new surgeries in the hope it will get processed before 23rd June at one of them.

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Also, why a paper form?! Couldn’t include it in the NHS app, for example?

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They’ve added that friction so that most people don’t bother

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I’m registered at my old surgery according to the NHS and with Babylon health according to BH. However BH haven’t been able to figure out why my registration hasn’t transferred and my old surgery won’t see me because apparently I’m not living in the catchment area.

I think you’re right though, I’ll just get this over to both

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I don’t really have much on my medical file so I’m not fussed.

I have a lot of potentially damaging stuff, I’m very much against the sale of my data

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Fair enough.
Worth considering whether you might have medical issues or other stuff on file in the future. If you don’t it out now, I’m not sure you’re able to in the future.

Bet that’s something to do with how individual surgeries/partnerships/trusts deal with data.
So many different systems, it may be impossible to sort this electronically for all of them.

Seems to work with vaccination status :man_shrugging:

Also, ultimately this all needs to go into one unified system. Any opt out could be at the ingestion point:

GP feeds in data about patient with NHS number 123 (maybe via csv upload). System checks opt out status and discards. Easy enough…

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If it was a for a centralised medical system I’d be ok but I don’t want commercial entities using my data

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Exactly this. Usage for research, NHS planning, etc. All fair enough. But commercial interest? No thanks!

It’s almost like they need a system like with the electoral roll: one redacted list available for everyone, and one full list only for medical purposes.

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Good point.

Purely speculation.

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It looks like you can opt out in the NHS app

Do I still need to fill out the word doc?

As far as I understand there are 2 pieces you need to opt out of: one can be done online (unless you have children) but the other can’t.

But I don’t fully understand it, to be honest…

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I’m going to check out that word doc again

There’s an online way to opt out of the sharing of your hospital records, but only the paper/Word doc opts you out of your GP records being shared.

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This is an excuse that comes up time and time again, and it’s just a cop-out (not accusing you of anything personally, but the NHS puts this narrative out there).

The reality is that there are only about 4 different providers of healthcare software, which all GP’s use. So it’s not difficult to integrate them at all, and NHS Digital already has integrated with all of them anyway (that’s how the NHS app is provided, and it’s how they are going to collect the data to create this new database, directly through integration with GP systems).

It therefore wouldn’t be that difficult to add support for an opt-out in the NHS app (since it’s controlled by NHS Digital anyway); even if it were difficult it should be something that would delay the rollout until implemented, not an excuse for forging ahead.

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Just for everyone to be fully aware, data for NHS research and planning is a separate opt out, called a “National Data Opt-out”. This is something you can make a choice on within the NHS app. Personally, I’ve opted out as I don’t trust them to anonymise my data properly before using it. I found it irritating that the NHS app didn’t simply present a toggle, but tried to “explain” what the data was used for in an attempt to persuade you to keep opted-in.

The opt-out for this new activity is called a “Type 1 Data opt-out”.

For clarity, there is also a third type of opt-out: the Summary Care Record. This is a slightly pared-down version of your medical record for use in emergencies. The idea is that you could attend A&E at the other end of the country, if needed, and they would still be aware of your allergies, etc. You can choose to have just basic information (like medications and allergies), additional information (like details of recent GP appointments) or no information (and not have a SCR) shared.