Key care.data letters ‘not sent’

The care.data programme could be further delayed because ‘expression of interest’ letters have not been sent to potential pilot sites, EHI understands.

Care.data is the government’s flagship NHS ‘big data programme’. It is intended to expand the Hospital Episode Statistics, link them to GP and other data sets, and release the information to researchers.

However, it became enveloped in controversy this spring, when medical and privacy groups objected to a public leaflet campaign that failed to include a clear account of the programme or an opt-out form.

The latest idea is for 500 GP practices to trail care.data in a phased roll-out starting this autumn. Clinical commissioning groups were due to receive ‘expression of interest’ letters about this earlier this month.  

However, EHI understands the letters have not yet been sent; casting doubt on an autumn start.

A spokesperson from NHS England refused to deny or confirm whether the letters have been sent. They said the commissioning board is continuing “to select CCG pathfinders and the pathfinders stage will continue through autumn 2014.”

Sam Smith from patient privacy campaign group MedConfidential, told EHI it was a “continuing indictment of care.data” that NHS England will not confirm if letters have been sent. “No one has reported receiving one, so we can only assume they didn't,” he said.

“The secrecy on the part of NHS England could suggest that they are attempting to sneak through plans which were judged as being unacceptable back February.”

Since the programme ran into problems, NHS director of patients and information Tim Kelsey has said he is listening to concerns about it.

Kelsey and the commissioning board both insist they are no longer bound by “artificial deadlines” while this happens.

A paper presented to the National Information Board earlier this month says the pathfinder project will “only launch when the board is happy for it to [do so]”.

It also says a decision to proceed will be made on advice from the Independent Information Governance Oversight Panel and the care.data advisory group which was established earlier this year.

“When launched, the success of the pathfinder stage will be evaluated before any decisions on future roll-out activity are taken by the programme board,” it adds.

“The critical path for delivery up to pathfinder delivery is being established for the board so that progress can be tracked against the key identified pre-requisites.”

The paper also says that the care.data programme is “still delivering without a business case” and remains under “intense scrutiny”.

It adds that resource gaps are also an issue and a number of new staff will be joining over the next few months.

“This will make a significant difference, including in regard to business case development, but there are still significant gaps in resourcing,” the paper says.

NHS England recently advertised for a new director of intelligence, which will be the senior responsible owner for the care.data programme.