A GP has taken the decision to automatically opt all of his patients out of the care.data extract scheme despite being told it is ‘against the law to do so’.
The GP in Oxford, who wished to remain anonymous, has sent a letter to students and staff at the university – with a further letter to be sent to his non-university patient population shortly – to inform them they will have to opt in to the scheme if they wish to have their data used by NHS England.
He was taking this approach, which he understands is against the law, because of 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.
However, it has proved controversial, with some LMCs saying they are considering boycotting the programme, 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 letter, dated 15 October and seen by Pulse, said: ‘In spite of the fact that I am told it is against the law to do so, my intention is to automatically OPT OUT all my patients and allow you to OPT IN if you so wish.’
The GP had intended to apply the opt-out codes to patients’ records in mid-November, but he postponed this as the Government announced it is to run a £2m national publicity campaign to raise awareness among patients.
Speaking to Pulse, said: ‘My intention is to go ahead, unless the Government changes its mind. If the Government changes its mind and says, “ok, let’s have an opt-in system” then there’s been no need to worry.’
The email was sent alongside a leaflet from NHS England, which he said was ‘inevitably biased in one direction’, and a separate one from the EMIS users group that gives the reasons against the scheme.
It also includes an email address for patients who wish to opt in with the notice: ‘I will assume that if you do not e-mail you wish to remain opted out.’
Setting out his reasons for adopting this stance, 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.’
‘I understand entirely the requirements for [good, solid data] from living in this town and having been involved in research in the past myself.’
‘But 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 with 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?”.’
Dr Paul Roblin, Berks, Bucks and Oxon LMC chair, told Pulse that the LMC did not necessarily support the doctor’s decision.
He said: ‘If you’re doing that you have to send it the entire practice population and give them the option to opt back in. That wouldn’t be the LMC’s preference.’
‘The LMC’s view has always been that no practice should opt out, particularly over the summary care record. You’d have to look at the details of the Health and Social Care Act, which does oblige GPs to cooperate with things like the care.data scheme, but that’s a legal opinion which I’m not able to give.’
‘I think the Government’s view would be that actually you’re in non-compliance with the Health and Social Care Act doing that. I think you need lawyers who are well versed in the obligations of the Act to pronounce on that.’
The Oxford Student newspaper reported that the student heads of the colleges involved were lending their support to the doctor with one ‘junior common room’ president commenting: ‘Based upon what I’ve heard, members of […our] JCR support our college doctor’s decision to opt us out of the scheme by default, and we respect his judgment on the matter, especially as he is taking some degree of personal risk in his efforts to keep our data safe.’
A spokesperson for NHS England said: ‘Under the Health and Social Care Act, practices have a statutory duty to share information with the Health and Social Care Information
Centre. The Data Protection Act 1998 sets out a framework under which data can be shared provided it meets the provisions of the Act. This includes ensuring people are aware and understand how their data is used and shared and their rights to object. NHS England has provided additional fair processing guidance and information to practices.’