More than 1.2 million people opted out of NHS data-sharing in June alone, triggering a delay to government plans to make patient records available to private companies, the Observer can reveal. The General Practice Data for Planning and Research scheme, due to launch in September, is now on hold with no new implementation date.
Under the proposals, GP health data for everyone in England, with partial removal of identities, would be shared with researchers and companies for healthcare research and planning. The scheme was quietly announced in May with a six-week opt-out deadline, which doctors' leaders criticised as too short.
Privacy campaigners warned that the process to anonymise data could be reversed. despite reassurances from NHS Digital. An online campaign encouraging people to opt out gained momentum over the summer, leading to 1,275,153 opting out in June alone, compared to 107,429 in May.
NHS Digital paused the programme in mid-July and will now conduct a listening exercise and consultation before launching a public information campaign. In a major concession, patients will be able to opt out at any stage, with their data deleted even if already uploaded. NHS Digital also pledged to increase security and privacy measures for data in use.
Phil Booth, coordinator of medConfidential, a group critical of the scheme, said: 'People do care about their GP records and their medical confidentiality.' He added that NHS Digital had 'made a bunch of public promises' and that it remained to be seen how they would be delivered.
