700,000 care.data opt-outs finally get to come off the database

DataIQ News

The Health & Social Care Information Centre, the organisation responsible for NHS England's shambolic big data project care.data, has finally agreed to grant the 700,000 patients who wanted to opt out of the scheme their wish - but not until January next year.

The patients were among the people who acted on receiving the nationwide door-drop, ironically headlined “Better information means better care”, which was heavily criticised as millions of people missed it. 

The leaflet itself - and the way HSCIC has handled care.data - has been slammed by doctors, MPs, privacy campaigners and even the Information Commissioner's Office since its inception, with many claiming that HSCIC had still not answered questions about patient privacy, most notably where the data will end up, and how it would remain anonymised.

According to a letter sent to HSCIC chair Kingsley Manning from the ICO, the opt-outs remain on GP practice systems and have never been removed from the database.

"This means that the opt-outs have not been actioned and those patients personal data continues to be released by HSCIC," said Dawn Monaghan, group manager of public services at the ICO.

She added: "[HSCIC] has continued to share patient data with organisations for purposes other than direct care after patients were offered an opt-out and significant numbers of patients objected to their data being used in that way."

The ICO said that as it had had a positive response from HSCIC, it would not issue an enforcement notice, instead opting for a formal undertaking that the organisation will comply with the opt-out requests by January 2016.