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GP takes 'unlawful' decision to opt patients out of care.data programme

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.’

Readers' comments (30)

  • Stupid.

    Why risk your livelihood and that of your family by going against the law which has been enacted by a democratically elected government? Yes, it's stupid but that what the public voted for and they now deserve what they get.

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  • We have a dysfunctional 'democratic' system which is supported by a corrupt legal one. I think we should applaud his bravery.

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  • We should all take this GPs lead and follow suit.

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  • Break the law and follow the consequences.

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  • He may be acting against the Health & Social Care Act, but he is fulfilling his obligations under the ICO obligation to make sure patients - as data subjects - are made fully aware of the change in use of their data!
    Keep reporting what happens next..

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  • Kudos to the Doctor for his bravery protecting the privacy of his patients and at least offering them a choice .
    People should not be bullied into accepting the governments dogma especially since this regulation is not directly related to the care of the patient . The relationship between a patient and their physician is the private regardless of the remuneration .

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  • There is a way round this - pseudonymisation at source, but the Health and Social Care Information Centre seems reluctant to explore this, though they are supposedly having a 'review'. I wish my practice would take the same approach, they seem to believe that everything has been given to GCHQ and the CIA already!

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  • Sometimes it just takes one person to stand up and say this is not acceptable. Well done.

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  • I cannot believe this case is ever going to come to court. Ther resultant publicity would give this brave GP the opportunity to talk even more publicly about the flaws in the government's current plans - flaws which are recognised by all those with a true understanding of these important isssues.

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  • First do no harm.....
    Thank goodness someone has acted on their conscience and done the right thing. Our brave colleague should be commended for the action he has taken and we should show solidarity and follow his example.

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  • i think the GP in oxford could argue that his actions are simply ensuring that 'all of his patients know and fully understand'' so they can make an informed choice to opt in or not. in this way he is striving hard to ensure he is meeting all of his obligations under the data protection act and acting in the best interest of his patients who he serves.

    I must say I admire colleagues who are able to stand by their principles as its clear to me that the caredata is a car crash of a project which hasnt been thought through carefully and which is very unlikely to generate any public benefit as the dataset without historical data is not fit for purpose. So the risks are high and the likely benefits are low.

    i would encourage the GP though to discuss his concerns with the Information Commissioners Office and also his defence union.

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  • Now if only there was an organisation that could organise this as a group, so that we could all stand together safe in the knowledge that we will be protected by numbers.

    Come on BMA, where is your leadership on this issue....

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  • If only I was as brave. Currently up to 9% of patients opting out and unsure what level triggers an investigation. Would have been far more honest of the politicians to have an opt-in clause in the first place. What am I thinking? 'Honest' and 'politician' do not belong in the same sentence.

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  • As a patient, I applaud the GP and hope that the GMC, MRCGP and BMA will finally find their moral courage as he/ she has done. I have written a statement to my CCG to ask for assurances from the Department f Health on consent, anonymisation of risk strified data, security, data access and common law of confidentiality. The latter having been overwritten by the SoS for Health on 1st April 2013 with the Act implementation. At a push, I can understand Opt out for clinical care (SCR) perhaps, but it must opt in for Secondary Uses. (SUS). I do not consent for my data to be used in commercial research and he should not have the right to take that decision away from me.

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  • WE SHOULD ALL DO THIS THEY WILL NOT TAKE EVERYONE TO COURT !

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  • There is a problem with this mode of data extraction and I think this stance highlights the problems. Could be the thin end of the wedge and we have already had "research" organisations asking to extract data and that if we do not say no, then they will assume consent (we said no just on principle!). Of course we need clinicians, particularly in hospital, to have access to the electronic patient record. So we need a middle ground approach that is, for anonymised data it is clear when and what that information can be used for and for patient identifiable datat we specify exactly where and when can be used (eg in A+E etc).

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  • I applaud this brave stance. I wish my practice was doing the same, however I am in a minority (and, it has to be said, secretly a bit relieved that I won't be facing the potential legal shit storm).

    However, he'll be lucky to keep his anonymity, given the information divulged in this article. I found his surgery first try with a Google search.

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  • Outstanding. Bravo.

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  • we have done the same so far 1 pt has requested to opt in.

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  • Neil Bhatia

    Well done that GP. Very brave.

    Hope you hold out until (I guess) the inevitable court order comes - and it will be interesting to see this all played out in a pre-election year... I think you can count on the support of very many GPs, and I hope the BMA will support you in any way they can.

    The GP is not refusing to release data full stop, just will release data only from patients who have given explicit informed consent.

    Neil
    www.care-data.info

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