Patients need a simple way to opt out of data sharing, says NHSX chief exec

The NHS’s current system for allowing patients to opt out of having their data shared with third parties is “overly complicated”, the chief executive of NHSX, the government body tasked with driving digital transformation in the NHS, has said.

Speaking at the Healthcare Excellence Through Technology (HETT) conference earlier this week, Matthew Gould said that the current system had “too many different opt out mechanisms”. It needed to be made “super simple” for the public, he said.

Earlier this year, the General Practice Data for Planning and Research (GPDPR) programme, which would have made patient data available to private companies, was halted after an online campaign. In May 107,429 people opted out of the programme, followed by a further 1,275,153 in June. Gould said that the NHS would not proceed with the scheme until technology was in place that would enable the NHS to delete an individual’s data retrospectively if they chose to opt out after the data had been collected. It was appropriate, he said, to have a “super easy system of opting out so that, if you’re not comfortable having your data used, you can easily opt out at any point.”

Two ways to opt out of sharing data

At the moment, there are two ways NHS patients can opt out of having personal data shared. Type one opt out means they refuse to have their data shared outside their GP practice. The second, a national opt out, means that they refuse to have their data shared by NHS Digital and other health organisations for research and planning. There had been plans to get rid of the type one opt out this year, but those plans are now under review. A decision on whether to retain it is expected by September next year.

Gould said: “Where we are at the moment is an overcomplicated overlap of too many different opt out mechanisms and we’re trying to work out how to radically simplify this. We are really clear, particularly as we look at GPDPR, that we cannot proceed unless we’ve done a really full engagement and have got the public and clinicians with us.”

The current data opt-out system was introduced in May 2018, in line with recommendations made in the 2016 Caldicott Review.