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Shocking Data Grab from the NHS

Sololobo
Superstar

https://www.theregister.com/2021/05/13/nhs_data_grab/

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-...

This collection will start on 1 July 2021 so if you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with your GP practice by 23 June 2021.

If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.

If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.

 




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14 REPLIES 14

goslow
Alessandro Volta

Not something I was aware of. Thanks for posting @Sololobo.

The section on 'pseudonymisation' is particularly worth noting.

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-...


@goslow wrote:

Not something I was aware of. Thanks for posting @Sololobo.

The section on 'pseudonymisation' is particularly worth noting.

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-...


I agree.

The statement "NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify patients in certain circumstances, and where there is a valid legal reason"" is particularly concerning.

 

 




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Sololobo
Superstar

The story continues: -
https://www.theregister.com/2021/05/17/nhs_data_market_access/




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Conflicting messaging overshadows NHS Digital's attempts to inform public about patient data slurp.

https://www.theregister.com/2021/05/24/nhs_digital_gp_data_store/




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https://www.theregister.com/2021/06/01/rcgp_urges_greater_communication/




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Patient data transfer still set to start in July

https://www.bbc.co.uk/news/technology-57341897




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用心棒
Very Insightful Person
Very Insightful Person

IMHO NHS Digital's intentions throughout have been less than honest; taking advantage of the pandemic, not publicising to avoid scrutiny and informed consent. For example NHS Digital's Mythbusting social media posts about the national data opt-out article stated:
2021-05-06-00.png
True, you can opt out at any time but why not mention here that any data already taken from your GP record NHS Digital will keep and continue to use; i.e. it cannot be deleted or its use restricted. Instead they choose to mention this here General Practice Data for Planning and Research (GPDPR), writing:
2021-05-06-01.png
BTW the Mythbusting social media posts about the national data opt-out article has disappeared and can now only be found via the Internet Archive's Wayback Machine

Sensible to opt-out now and make an informed decision later.

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goslow
Alessandro Volta

Deadline on this now extended to September

https://www.bbc.co.uk/news/uk-politics-57400902

Friends and family members I have mentioned this to have fallen into two groups, either wanting to opt out ASAP and in full or zero interest/concern in the matter. Even with the deadline extension, suspect that a majority will probably be in the latter group.

The Register also reports here https://www.theregister.com/2021/06/08/uk_gov_delays_gp_data_grab/



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