Privacy groups pleased government has recognised need for transparency
The government has delayed plans for a centralised database of UK citizens’ medical information, following pressure from privacy groups concerned about the ramifications of the grand project.
Care.data has now been delayed by six months, with people’s data now due to be collected in the Autumn rather than April. Tim Kelsey, who is in charge of the project, admitted people needed to be properly informed of how their data would be collated and anonymised before the initiative was launched.
Care.data database plans put on hold
“Finally, officials at NHS England have seen reason. To upload millions of patients’ confidential data without providing full and proper information or seeking consent would have been the largest breach of confidence in NHS history,” said Phil Booth, coordinator for medical privacy group medConfidential.
“It still could be, if NHS England does not now write to each patient in England individually by name, explaining the risks it has acknowledged as well as the claimed benefits. And this time they’d better not forget to include an opt out form.
“This delay will mean nothing if the Care.data programme is not overhauled to provide patients with a clear and constantly updated picture of exactly who will have access to their data, why and what for. The entire scheme could do with a radical dose of transparency.”
Various concerns remain about Care.data, which its proponents say will help researchers find cures for serious diseases. One is that a centralised database provides a nice target for hackers.
NHS England has been urged to write to patients individually, including an opt-out form with plenty of detail on what Care.data is.
The government has various plans to update the NHS. It wants the organisation to go paperless by 2018, which will see yet more databases created in the drive to make the health service more efficient.
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