Commissioners involved in the Care.data pilot programme will not start extracting information from GP patient records until after the May general election, a senior NHS England figure has said.
NHS England national director for patients and information Tim Kelsey said scrutiny of the process by an oversight committee, headed by national data guardian Dame Fiona Caldicott, needed to take place before data extraction could begin, and this would not take place until after the election.
The Care.data project intends to link patients’ GP records with their hospital records to create a new, richer database.
NHS England had initially intended to begin extracting data in autumn last year but the programme has been dogged by concerns about patient confidentiality. It is now being piloted by clinical commissioning groups in Leeds, Blackburn, Somerset and West Hampshire.
Addressing the UK e-Health Week conference in London, Mr Kelsey said: “We are hoping… to investigate whether we are at the right standard [of information governance] over the next few weeks.
“Dame Fiona will take a view, which certainly won’t be until after the election, as to whether that standard has been achieved.”
Mr Kelsey told HSJ that while the extraction would not take place before the election, pathfinders would send out communications around the data extraction and linkage programme.
However, campaigners said crucial issues needed to be resolved even before the communications were sent out, regardless of extraction of patient data taking place.
Phil Booth, coordinator for campaign group medConfidential, said new laws to protect patients from having their data misused had not yet been put on the statute book.
These include regulations under the Care Act 2014, which underpin the government’s pledge that organisation deemed to be misusing patient data would be barred from accessing NHS data.
Mr Booth said: “They can’t tell patients they have legal safeguards to protect their data if they’ve not put the law in place yet. After months they still have not tabled the ‘one strike and you’re out’ regulations in Parliament. These regulations need to be in force before they can make that promise.”
Mr Booth also said medConfidential was not yet satisfied by arrangements for patient opt-out, including previously reported issues about the consequences for those who have already opted out, and that his group “would seek to halt the rollout of Care.data again” if the outstanding issues were not resolved.
Earlier this year it emerged that patient opt-outs could unintentionally exclude them from NHS direct care services like e-prescribing, bowel screening and e-referrals.