From the 1st July 2021, patient data from GP records will be extracted and sent to NHS Digital for the purposes of “planning and research”.
Patients of course have the right to object – but the question is whether patients have been consulted? And who’s responsibility is this?
In my view this is a distraction from the government by passing laws and issuing legal “directions” based on access they gained through the 2012 Health and Social Care Act and in my opinion is going to place GP practices (again) in the firing line from the public when it’s the government who should be taking the responsibility and the fault for the handling of this data.
The Queens speech (https://www.gov.uk/government/speeches/queens-speech-2021) outlined on Tuesday 11th May, highlighted that the Health and Care bill measures will be brought forward. The next day on the 12th May, NHS Digital issued a new Data Provision Notice (https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research) that fundamentally will change the way that data is collected from GP practices – in my view literally ‘stealing’ patient data. But as this is a legal direction that has been facilitated over the last few months where health laws have been changed by stealth there is not much we can do. Really good summary here (https://medconfidential.org/for-patients/gp-2021/).
What can be done is that patients should be informed (although NHS Digital are keeping quiet on this one) that patients have a right to not have their data leave the GP practice system – this can be done by applying a code to prevent data being released from GP records – or alternatively if data has left there is an online form patients can fill to prevent it being processed further.
So basically – an overseas pharmaceutical company – or frankly anyone – could apply for the data to be ‘sold’ to them – yes – there is already a pricing structure that has been set up (https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges).
So – to me this is smoke and mirrors and I would not trust the current GP bashing agenda and the cynic in me would say that it’s to distract from this bigger picture which we should rightly be up in arms about and challenging our leadership on.
What can we do? Patients need to be informed – and given the right to opt out – that’s the only option we’ve got so far – but that would require an enormous effort as we have until 23rd June to get patients to request to have the code applied on to the GP records.
Opt out by submitting this form to your GP:
For any data that has left the GP practice, you would also need to register your objection here:
Overview – Choose if data from your health records is shared for research and planning – NHS (www.nhs.uk)