More than a million people opted out of NHS data-sharing in one month in a huge backlash against government plans to make patient data available to private companies, the Observer can reveal.
The General Practice Data for Planning and Research scheme is now on hold with no new date for implementation, and NHS Digital has made a series of concessions to campaigners to try to salvage it.
Under the scheme, GP health data for everyone in England, with identities partially removed, would be made available to researchers and companies for healthcare research and planning. The scheme is more extensive than current GP data-sharing arrangements.
But after the proposals were quietly announced in May, doctors’ leaders objected to the short six-week deadline for the public to opt out of the scheme, while privacy campaigners warned the process to remove identities could be reversed.
The deadline was initially delayed to September, but an online campaign encouraging people to opt out grew over the summer. Government figures show that in May 107,429 people opted out. In June, a further 1,275,153 followed.
“We became aware of this latest GP [data] grab in late March,” said Phil Booth, coordinator of medConfidential, one of the groups most critical of the scheme. “We said ‘well that’s just going to blow up’ … and then it did blow up, exactly as we predicted.
“People do care about their GP records and their medical confidentiality. And there is a simple straightforward thing that they can do, which is to tell their GP ‘please don’t let my data be used in this way’.”