05.02.14
Care.data opt out information ‘not clear enough’ – Kelsey
NHS England has acknowledged that there should be more clarity about the new care.data programme, which will see patients’ medical records shared from March.
The change allows researchers and drug companies to use ‘pseudonymised’ versions of patients’ records. It could help boost the development of new treatments and improve standards across the NHS.
But campaigners have raised concerns about privacy and risking the publics’ trust. To opt out, patients must arrange a visit with their GP and ask for their data to be kept private.
NHS England is sending every household in England a leaflet to explain the new programme.
The Information Commission Office’s Dawn Monaghan told the BBC Today Programme: “At the moment we don't think it is clear enough, on the website, or on the information that has been sent out, exactly what data is going to go and what is not going to go.
“What it says is that you can object to your personal confidential data leaving the GP surgery. We are not sure that without further explanation … whether people will understand what the means.”
Tim Kelsey, the NHS national director for patients and information, said: “Maybe we haven't been clear enough about the opt-out; I agree with that.”
But he added: “Let me be absolutely clear now. People who don't trust the NHS to manage their data securely now have a new right to opt out of this scheme. To be honest, all they need to do is contact their GP to opt out.
“We are doing this because it is vital that we help the NHS care better for the patients it is serving.”
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