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



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.