Controversial scheme to collect and share patient data delayed

Ministers to use extra time to consult with the public and doctors

Controversial plans to collect and share patients’ NHS data have been delayed as ministers seek to reassure the public over its ramifications.

Health bosses believe the information will save lives by helping to develop cures for serious illnesses.

But experts had warned patients were being kept in the dark about the use of the data on treatments, referrals and appointments stretching back 10 years, and called for the scheme to be paused.

Now ministers have announced that it will be delayed to allow time to talk to patients and doctors and “ensure the data is accessed securely”.

The collected data is anonymised, to protect the identities of patients.

But the British Medical Association (BMA) and the Royal College of General Practitioners (RCGP) had expressed concerns the plans were being implemented too quickly, without sufficient patient consultation.

Under the earlier timetable, the BMA said patients had only until 23 June to opt out and ensure their data was not given to NHS Digital.

But ministers said the scheme would be put back until the start of September.

Health minister Lord Bethell told peers: "Data saves lives. We have seen that in the pandemic and it’s one of the lessons of the vaccine rollout."

He said the GP data programme "will strengthen the system and save lives", but added: "That’s why we are taking some time to make sure that it is as effective as possible so the implementation date will now be 1 September.

"We will use this time to talk to patients, doctors and to others to strengthen the plan, to build a trusted research environment and to ensure the data is accessed securely."

The decision was welcomed by the Information Commissioner. Elizabeth Denham said there remained “considerable confusion regarding the scope and nature” of the programme.

Shadow public health minister Alex Norris said: “This is a welcome decision, but it was only achieved after overwhelming pressure from patients, and health professionals alike.

“This must now mean that all elements, including the opt-out, are delayed and there must be a full public consultation about this issue before the data collection is resumed. Labour will continue to raise this with Ministers to ensure this is the case.”

BCS, the chartered institute for IT, called for a “robust mechanism” to check what is happening with patient data and for patients “to be told very clearly whenever there are significant changes to how our data is shared, if that might give us pause for thought.”

NHS Digital said the information would be accessed by organisations “which will legitimately use the data for healthcare planning and research purposes”.

All requests to use the data would be subject to independent oversight and scrutiny, the body said.