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Why I'm opting patients out of the care.data scheme

One anonymous doctor explains why he took the decision to opt his patients out of the care.data scheme - despite being told it was against the law to do so

By allowing people – without their specific permission – to have their data taken out, by default as it were, you could well fall foul of the Data Protection Act. I cannot see how you square that with your duty as a doctor to protect the information, unless the patient has specifically given you permission as well. 

NHS England has deferred [the rollout] until January so it can send this hugely biased leaflet to all the households.But who reads all those things that come through your letter box? They’re just sent to irritate. The vast majority of people won’t know, and most of them probably won’t understand the implications of what’s being said, because it is so biased.

So what I’ve done is send my patients a copy of the brochure produced by the EMIS users group, and by the Government - they’ve had both sides of the story.

So far, overwhelmingly, the feedback – without my asking for it – has been very positive. I have had one person, involved in cancer research write me a very strong email, saying what I’ve done is not legal.

That remains to be proven. I’ve already said that it may not satisfy the Health and Social Care act, but I explained fully why I felt as I did, then responded to that particular individual by sending references and so on about it, and they were very pleased that we’d filled them in and understood it better. 

They still didn’t agree with me, but their misreading was that I was removing their option to do anything themselves, which I wasn’t. I was simply reversing it, saying ‘by all means opt in if that’s what you want to do, but I would rather have your specific permission before I release any information about you’, rather than the other way round. 

So giving them exactly the same choice, the patients can understand it - they can tell me if they’d like their data to be used in that way. 

That seems to be legal for all the GMC rules, and the Data Protection Act, because they were specifically telling me they don’t mind their information being released. How it squares with the Health and Social Care Act, I don’t really know.

Readers' comments (14)

  • I agree with you. Will be interested to see if legal action follows.

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  • Thank you for standing up for us and our data privacy. The care.data initiative is being labelled all over the rollout as the duty of GPs. Your action is the only authentic way of fulfilling that duty in my eyes as a regular patient. If Secretary of State decides that because NHS care is free at the point of service, so therefore any data from that should be available to researchers and private health providers, then the Dep of Health should be honest with us, the public, about what this means. We can opt in, or not use the service. But stop pretending the 'NHS' is being preserved. It is almost all privatised - you seem to think you have the right to privatise us body and soul, if you now sell our tissue and research data too.

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  • Unfortunately much patient data is already extracted in other ways but I agree with you . If this can be resolved in a timely manner in your favour then I hope I and many other practitioners will follow your lead.

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  • Bravo....wish you were our GP...wonder how many will make any real effort to inform people

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  • I agree with you and it is a worry to me that the data is being extracted I will wait to see the outcome. I dont think patients understand the implications of their data being used and it will only come when there is a test case of data confidentiality.

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  • Your action is courageous, honourable and honest. I shall certainly be asking my PPG to consider arguing for mass opt-out with, I trust, the support of our GPs. Are the BMA and RCGP doing enough about this in general, and to support their members in particular?

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  • Your action is an important challenge to governments who interpret democracy as "having been elected". Did you also refuse to comply with the Summary Care Record roll out? I have challenged the concept that this should be an "opt-out" option and have reached over 92% of patients registered to make a definite decision. This concerns me even more than the care data as there is no anonymisation of any sort. Good luck with your battle

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  • Your action is courageous, honourable and honest.

    That's why you have to remain anonymous.

    In the NHS we should not fear speaking up as whistleblowers are protected.

    Rrrrrrriiiiiiiiggggggghhhhhhhttttt...

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  • I too will be raising at our next PPG meeting and at the next monthly IM&T meeting at our CCG. We are using the medconfidential poster (Google their website to download it) and opt-out forms in our waiting room and on our website. When my care.data form lands on the doorstep of my home, I will be using it to opt myself and my family out of this piece of cynical government policy. Leaving aside the confidentiality issues, I believe that antone daft enough to buy this data will get a load of rubbish where anything other than QOFable conditions are concerned. Obviously the government don't give a monkeys about the quality - used car salesmen?

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  • I agree. The government have a history of being rubbish with confidentiality. Social security details from the department left on trains etc. (National news 2 years ago)

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