The government has halted its controversial GP data sharing scheme, following Lord Bethell admitting 'mistakes' have been made in the way the programme has been run and managed.

The launch was previously delayed by three months, with patients being given the option to opt out of plans to share GP medical records with third parties by 1 September.

In a letter to GPs, the government has now said that it would only go live once the following four conditions have been met:

• The ability to delete data already collected prior to a person choosing to opt out;
• The backlog of existing opt outs being fully cleared;
• The development of a “trusted research environment” — a repository into which the data will be collected and accessed only by NHSD-approved users without further extracting the data; and
• Greater patient awareness of the scheme.

WHY IT MATTERS

During the committee, Bethell also said letters could be a “clunky form of communication”, but added he would not rule it out.

Health minister, Jo Churchill has called for a simple system of opting out of data sharing, after it emerged thousands of opt outs have not yet been processed due to COVID-19 disrupting operations and the administrative burden it has put on GPs.

Campaigners, the BMA and the Royal College of GPs (RCGP) are among those who have expressed concern that the plans have not been well-publicised, leaving doctors to inform patients.

There are also fears about sensitive information on GP records being shared, including mental and sexual health, criminal records, smoking, drinking habits and instances of domestic abuse.

NHS Digital says the current system for collecting patient data is more than 10 years old and needs replacing.

THE LARGER CONTEXT

The NHS tried to put GP records in a central database in 2013 under the Care.data programme, but it was abandoned in 2016 after confidentiality complaints.        

ON THE RECORD

Speaking at a Health and Social Care Committee hearing into the GP data sharing scheme, Lord Bethell said: “I do think we may have made a mistake in thinking about this as an IT project rather than something that really has to be engaging with GPs and the public, and we’re not really set up to do that within the NHS so we’re having to create infrastructure and a technique for doing that.”

In a letter to GPs, Churchill, said: "We are working in collaboration with a range of partners including the Royal College of General Practitioners (RCGP) and the British Medical Association (BMA). I want to reassure you that we have heard your concerns loud and clear and will continue to listen."