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Care.data could harm patient-doctor relationship

GPs insist scheme should be opt-in not opt-out, and patients better informed

Louise Prime

Thursday, 09 October 2014

It is crucial that the care-data programme is not allowed to threaten the doctor-patient relationship, GPs have warned. They say that patients should have to opt in to rather than out of the programme, and that it’s essential for patients to feel certain that they can still tell their doctor important information in confidence.

NHS England announced this week that GPs in 256 practices in four clinical commissioning group areas – Leeds North, West and South and East, Somerset, West Hampshire and Blackburn with Darwen – are taking part in the ‘pathfinder stage’ of the care.data programme. Leeds GP and BMA Council member Dr Richard Vautrey told BBC Radio 4’s Today programme this morning that patients must be fully informed about all the risks as well as the benefits of the programme – and it must then be entirely up to them to make their own decision about whether or not to sign up.

Dr Vautrey said that although the system has been improved since earlier this year, there remain potential issues that the public will have concerns about – how the information is collected, how it’s stored, who has access to it, as well as whether future governments might want to change the arrangements. He said: “What we have to do, is try to ensure that this is balanced against the benefits – which may be for research, whether it might improve the quality of care. And then it’s up to the patient themselves to actually make that decision whether they sign up for this or not.”

But he warned: “The key thing is that we need to protect the doctor-patient relationship. We need to be absolutely confident that every single patient is still willing to tell the doctor the intimate details of their life, which they do at the moment with confidence that that information will be protected.”

He said that the BMA remains concerned that patients have to opt out of, rather than in to, the programme. He said: “The BMA has long had the position that patients should make an active decision to opt into this programme, seeing the benefits of it.”

Tim Kelsey, national director for patients and information at NHS England, pointed out that the programme could help the NHS to understand, for example, why so many people are diagnosed so late with cancer, often through A&E departments – and so to reduce that number. He said that ensuring the NHS can continue to provide high quality care to everyone is at the programme’s heart, and argued that if people needed to opt in then there simply wouldn’t be enough data collected to achieve those aims. He said: “We must do everything we can to make sure that people are fully aware of both the benefits of the programme and their right to opt out of it.”

Mr Kelsey acknowledged the theoretical risk of re-identification of individuals from the records, and also that he couldn’t promise there’d never be a breach of data. But he added: “We’ve changed the law to provide additional safeguards and we’ve put in place a whole range of measures to do absolutely everything we can, in this digital age, to provide reassurance to our doctor colleagues and to patients – but of course I can’t rule out the risk of something happening, for which reason we have provided this opt-out … we’ve introduced this package of safeguards to make it both very difficult, and the consequences very severe, if anybody even attempted to try and do that.”

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