Source: Pulse 12 November 2013
An Oxford GP has decided to automatically opt all of his patients out of the care data extract scheme.
The GP, who wishes to remain anonymous, sent a letter to students and staff at a university to inform them that they must opt in to the scheme if they wish to have their data used by NHS England. A further letter is to be sent to his non-university patients shortly.
He understands that his approach is against the law, but he fears that the information will be misused and will not be fully anonymous as the Government has promised.
Under the scheme, patient identifiable data from GP records will be extracted using the General Practice Extraction System and shared with the Health and Social Care Information Centre. The information body will link the primary care data with secondary care data and publish bulletins of anonymised aggregate information.
The scheme has proved controversial, with some LMCs thinking of boycotting it, while the BMA have also received enquiries from LMCs and GPs considering putting 'opt out' read codes in all their patients' records until they have explicit patient consent. However, this is the first reported letter being sent out to patients.
The email was sent alongside a leaflet from NHS England, which the GP said was 'inevitably biased in one direction', and a separate one from the EMIS users group that gives the reasons against the scheme.
The GP told Pulse: "I don't think there has been any publicity at all about the Government's plan to go fishing in everyone's computers. There's been nothing in the national newspapers at all about it. But I think it's a great shame that this is being brought in through the back door as it were, without anyone doing anything about it.
"The difficulty with the Government's plan is two-fold: one, it thinks there is a way of anonymising data and no-one will be able to put it back together and that just isn't true; two, once you give the Government information it's liable to be misused somewhere or other."
The GP said he hadn't consulted anyone else about this yet, and he was well aware of the potential legal conflict. He said, "The Health and Social Care Act seems to be in direct conflict with [the Data Protection Act and the GMC's Duties of a Doctor], so either way doctors are going to be left with a decision 'Which law do you break?'."
The Government has announced it is to run a £2m national publicity campaign to raise awareness among patients during January 2014.
For further information from NHS England see: http://www.england.nhs.uk/ourwork/tsd/data-info/
For the EMIS NUG leaflet explaining the changes in how personal data will be handled please see: http://emisnug.org.uk/sites/default/files/files/Care%20data%20PiL%20v7%20A4_0.pdf