The burning question, then, is: ‘will your permission be asked before your medical information is uploaded?’ To which the answer is a straightforward ‘no’. The default position is that the uploads will go ahead unless you do something to stop them.
The original plan was that nobody would have any say about the use of their data. After concerns were expressed by doctors, NHS England agreed that there could be a ‘right to object’. Following our meeting with the health minister Jeremy Hunt, he announced that there would be a right to ‘opt out’ and that the 750,000 patients who had already opted out of the Summary Care Record would automatically have their existing opt-out respected.
On 29th May, NHS England published its guidance to GPs which makes it clear that existing opt-outs will not be respected. Those who opted out of the previous, more limited upload of their Summary Care Record will now need to opt out all over again.
NHS England is currently in discussions with the Information Commissioner. The Information Commissioner’s Office is obviously concerned that patients should be made aware of the data-upload plans, informed of their ability to opt-out and given sufficient time to exercise it. It should be noted, though, that the ICO’s powers are limited by the way in which the legislation has been framed.
NHS England has prepared posters and leaflets for GPs to display in their surgeries. You may feel that these are short on detail. More informative is the patient leaflet prepared by EMIS one of the main suppliers of GP surgery systems.
Pilots of the care.data system are imminent. They will be taking place in 82 GP surgeries dotted around England. Meanwhile, all GP practices in the north of England have been told to be ready for the full roll-out within the next 8 weeks.