Care.data on hold until election

Lingering questions dogging NHS England's controversial care.data programme will hold up data extractions until after the May general election, Tim Kelsey has confirmed for the first time.

However, NHS England's director of patients and information told EHI News that communications about the programme will still be sent to patients in pilot areas as part of the pathfinder phase.

Speaking at the e-Health Week conference in London, Kelsey said the organisation is still working on its response to a significant number of questions about the programme, raised by an independent review, that must be answered before it can move ahead.

He told the audience NHS England has "learned just an unbelievable amount" since being forced to pause the programme last year, but will not be able to get approval to move ahead from national data guardian Dame Fiona Caldicott before the election.

The care.data programme will extract data sets from different organisations, starting with GP practices, and link them to an expanded set of Hospital Episode Statistics within the 'safe haven' of the Health and Social Care Information Centre.

NHS England was forced to “pause” the programme in February last year after medical and privacy groups objected to a public leaflet campaign that failed to include a clear account of the programme, who would receive the data, or an opt-out form for patients.

Last October, clinical commissioning groups in Leeds, Blackburn, Somerset and West Hampshire were selected as care.data ‘pathfinders’ as part of a revised roll-out plan.

However, a December report from the Independent Information Governance Oversight Panel, chaired by Dame Fiona, said there were a wide range of unresolved questions that must be answered before the pathfinders can proceed.

Kelsey told EHI News that data extractions "were never going to happen before May", but communications will still be sent out before the election to provide Dame Fiona with more information about patients' understanding of the project.

"Dame Fiona has asked to review the standard of our fair processing before data extractions…we've always said that there was no fixed timetable."

However, Phil Booth from privacy watchdog medConfidential told EHI News that NHS England should resolve unanswered issues, such as problems with the opt-out process, before moving ahead with fair processing.

"Once they start fair processing the pressure will be on to extract the data because they’ve told patients they are going to do so.

"As NHS England refuses to publish its criteria for success before they start fair processing, they can move the goalposts depending on how they do."

Kelsey told the audience that NHS England has spoken with a number of stakeholders to better understand the problems that led to the pause last year. "I think we have learned just an unbelievable amount from what went wrong with care.data."

Kelsey said that "at its root", the controversy over care.data reflected the delicacy of balancing the desire for increased access to data in real time with the need to respect patients' privacy concerns and make sure they understand their rights to opt-out.

He said NHS England is working on its response to the questions raised by the independent panel, and is hoping to test whether it has met the right standards before the end of the month.

However, it will not receive a response from Dame Fiona until after the election, which will then lead to "a proper conversation" with the public about what to do next. "The NHS is at its best when it listens hardest, and we've got a lot of work to do."