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NHS about to share your personal data!

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Thought perhaps all U.K. based forum participants might be interested to read.

You have til 23rd June to register objections by returning completed Type1 form on NHS website to your own surgery.

I’m no politic animal but this is being introduced by stealth and I object to that.

Everybody should have been informed it’s coming in.

Ironic Docs can’t discuss med conditions with next of kin but…?

How are they bypassing the DPA?

It’s not good enough for them to say it’s been on the NHS Website. We hardly check that regularly for news do we. And what about those without computer access. Apparently posters are up in Doctors surgeries. With Covid restrictions I wonder how many people have received an invitation to attend their surgery throughout the Covid pandemic. Very few I suspect.

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Lol, quite!

Not a website I thankfully visit on anything like a regular basis!!

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No it’s hardly the place you pop into in the hope of finding today’s news is it. I really do think the NHS have been very sneaky about this proposal. That’s what has annoyed me more than anything.

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Having said that I might start logging in just on the off chance they announce a cure for MAV :rofl:

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Heard yesterday that the intention to state data has now been put back until 1st September to give more time for consultation between doctors And patients and further investigations into sharing protocols. Not currently sure where that leaves the objection deadline but will update as and when.

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Thanks for this Helen. I was considering posting about it but wondered if it was “too political.” You are right - it is so sneaky. My form has already gone to the GP and I signed an opt out about sharing confidential data with groups outside of my personal healthcare when I joined my latest GP. I also opted out of the last attempt to release our data in 2016, " care.data" if anyone recalls.

For the past 30 years or so the NHS has been giving access to our anonomyized data (for a cost -recovery fee) to unis, commercial organisations and research groups all around the world for health related purposes so a lot of our private info is already out there. Easy to patch and cross reference data to de-anonymize it these days. NHS Digital site (and their paltry fees) is worth a look if anyone is interested in this. They claim NHS will never sell your data - weasal words in my opinion as they provide the data at “cost” of providing so basically give it away, organisations can apply for bespoke data sets that are record level (can relate to a single individual) and will even cross reference these with other bespoke data sets. Apparently organisations wanting the data have to fill in “lots of forms” about confidentiality and not selling on, justify why they need the data for health research etc. but does anyone police how the data is then used and kept and how could they?

This latest grab will pseudonomyize the data (not anonymise it) it means that the data is given a special code to obscure the name, DOB, NHS number etc and then a code can also be used (if permission is granted) to reverse it making all the personal identifiers visible.

Like everyone, I want to find better treatments and researchers need good data but I want to know that good checks and balances are in place and that data will not be leaked and then used for commercial gain, targetting or to vet people in other ways.

I thought this article was a decent overview of the issue:

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You could always have run it by James by PM first. I did. I couldn’t tolerate the sneaky way they went about it. Patients need to be properly informed about these things first.

Yes I saw that about the pseudo anonymous method. Suspicious why they did it that way. For easy reversal obviously. Sounds as if the average crossword puzzler could decode it. You most certainly wouldn’t need anybody from Bletchley Park.

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Or Helen :slight_smile:

This should be a “pan-aisle” concern. I trust most people believe in personal jurisdiction over personal data, and if you don’t it just might be that you’ve never had that luxury so are not used to having the discretion over it.

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:rofl:

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