Crisis talks are taking place over the future of the government’s controversial care.data plans after the British Medical Association (BMA) called for the scheme to be stopped until it had been better communicated to patients.
It follows weeks of mounting criticism that the government and NHS England had failed to fully inform patients about the impending extraction of patient data to a centralised database, prior to being sold to pharmaceutical companies, other researchers and even other third-party organisations.
NHS England agreed to a leafleting campaign in late January and early February following pressure from the Information Commissioner. However, the leaflets did not contain clear information about opting-out and, in any case, fewer than one-third of households claim to have received one, according to surveys.
Worst of all, perhaps, NHS England’s own risk assessment admits that the centralised patient information database may be vulnerable to hackers and the data open to misuse.
With 10 days to go before the data extraction process begins, patients have only days left to register opposition to their data being uploaded from GPs’ surgeries into the care.data database.
Even if they do provide forms to their GP surgery requesting an opt-out, it is unclear what the opt-out actually entails.
Dr Chaand Nagpaul (pictured), chairman of the GPs committee at the BMA, said: “The BMA is deeply concerned about the government’s public information campaign for care.data. With just weeks to go until the uploading of patient data is scheduled to begin, patients remain inadequately informed about these proposals.
Dr Nagpaul said patients must be made fully aware of what the proposals meant for them and their right to object to the extraction of their data.
He continued: “Today we call on the government to ensure public trust in the system by properly informing the public about care.data before the currently planned data extracts commence, and produce evidence this has been achieved prior to uploads taking place.”
For more about care.data, including contributions from both the HSCIC, in favour, and campaigning group MedConfidential, against, please click here.
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