Patient Data Opt Outs (UK): Apologies... - Pernicious Anaemi...

Pernicious Anaemia Society

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Patient Data Opt Outs (UK)

Sleepybunny profile image
8 Replies

Apologies for being a little off topic for forum but thought this would be of interest to UK members.

BBC article about sharing of patient data.

bbc.co.uk/news/uk-politics-...

Article about Data sharing from NHS Digital, mentions type 1 opt out and national opt out

digital.nhs.uk/data-and-inf...

National data opt out

digital.nhs.uk/services/nat...

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Sleepybunny profile image
Sleepybunny
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8 Replies
porter5 profile image
porter5

NHS Records.Have you ever tried to get your records? Went to hospital after making an appointment to

get my records. They only had records of that hospital, none of two other hospitals I had

been in or my GP records or two private surgeons records. I had better records than them.

A complete waste of time. The left hand doesn't know the right hand exists!!

Sleepybunny profile image
Sleepybunny in reply toporter5

Hi porter5,

Thought these links may be of interest...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

ktwing profile image
ktwing

Just for info, I'm pretty sure this only applies to England, not the whole UK - I tried to opt out from Scotland and couldn't find a way using the links I had, and sure enough, the articles all seem to say England. If I'm wrong, I would love to know how to opt out in Scotland!

Budsa profile image
Budsa in reply toktwing

Scotland are not participating in this scheme.

deniseinmilden profile image
deniseinmilden

Thank you! I've been thinking about this over the last few days so it's really helpful.

Hi sleepybunny many thanks for posting this I used the link and opted myself and husband out,my confidential info is exactly that.xx

Sleepybunny profile image
Sleepybunny

Statement by Welsh government on sharing patients data.

gov.wales/written-statement...

Sleepybunny profile image
Sleepybunny

SPIRE Scottish Primary Care Information Resource

spire.scot/

Article about Data Loch (Scotland)

theferret.scot/data-loch-to...

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