Exclusive Patients will be given until 25 August to opt out of NHS Digital’s mass extraction of GP data, by contacting their GP practice.
This comes as the controversial exercise was delayed last week, from a planned extraction date of 1 July until 1 September.
At the time, health secretary Matt Hancock said the deadline for opting out, previously set to 23 June, would also be extended.
This followed warnings from the BMA and RCGP that patients had not been sufficiently informed of the General Practice Data for Planning and Research (GPDPR) programme, which replaces the GP Extraction Service (GPES).
Patients can opt out of NHS Digital’s GP data extraction by filling in a type-1 opt-out form and sending it to their GP practice via post or email by the deadline.
Patients can also register a less stringent opt-out, called a ‘national data opt-out’. This means NHS Digital can extract the information but not share it with any other organisations, except for the purpose of the patient’s own care.
It can also be shared in exceptional circumstances, including ‘where there is a legal requirement or where it is in the public interest to do so, such as helping to manage contagious diseases like coronavirus’.
Any opt outs after the deadline will stop NHS Digital from extracting further data but it will retain data already extracted.
An NHS Digital spokesperson told Pulse: ‘The data will flow from [1 September] so people should opt out before [25 August] to allow for that week.’
They added that they do not hold data for the number of type-1 opt-outs that were registered since the GPDPR programme was announced.
However, 100,000 national data opt-outs were registered during the month of May, the last time period for which data was available. This was up from just 3,500 in April.
Hampshire GP and data autonomy advocate Dr Neil Bhatia told Pulse: ‘[Processing type-1 opt-outs] is just another thing dumped on top of us. We seem to be heading towards another wave of coronavirus, and this is just more unwelcome work in the middle of a pandemic. But we’ll do it, because that’s our job and we take these things seriously.’
He added that he suspects there will be a ‘flurry’ of opt-out forms close to the September deadline if there is more media coverage at that point.
He said: ‘There was a lot in the press in the last two weeks [about GPDPR], and we got hundreds of forms across each practice. Then it will quieten down a bit…and then there is always that risk that [GPs] are going to suddenly end up with a whole load of forms right at the last minute.’
‘Practices really won’t be happy’ if they end up having to process the opt-outs in a rush, ‘because suddenly it will be very difficult’, he said, adding patients will also be ‘very angry’ if their requests aren’t registered in time, as ‘there is no way back’.
Pulse revealed last month that privacy campaigners fear the new automatic extractions of data will be ‘far bigger’ and ‘more intrusive’ than the scrapped care.data project.
Pulse also reported on Friday that each GP practice will need to perform a data protection impact assessment (DPIA) before NHS Digital extracts the data from GP systems.