Care.data helpline receives 3,500 calls

The helpline set up to provide patients with information about care.data received nearly 3,500 calls in its first three weeks.

The helpline was set up at a cost of £800,000, so each call so far has cost about £230.

The phone line is part of a £2 million publicity campaign to inform patients about the programme, which will collect a monthly dataset from GP practices and link this with Hospital Episode Statistics and other data, to create new Care Episode Statistics.

A leaflet drop to 22 million homes about the programme concludes on 31 January.

A Health and Social Care Information Centre update on care.data, published in its latest board papers, says the patient information line set-up to handle patient queries in relation to the leaflet received nearly 3,500 calls up to 23 January.

The top query was whether a person can change their mind and what they should do if they want to object, but cannot get to their GP practice.

Callers also asked how long they have to object, what they need to do if they are happy for their information to be used and “what is the secure environment mentioned in the leaflet?”

The safe environment is the HSCIC, which will receive identifiable patient information in order to link datasets and then distribute it in anonymised and pseudonymised formats.

Patients have four weeks to object before the first phase of extractions begin in March. The full extraction programme will be in place by May and the first release of linked data is due the following month.

The HSCIC report says that its web page about ‘how we look after information’ also had 4,040 unique visits between 6 – 23 January.

NHS England’s chief data officer Geraint Lewis told EHI in July last year that the organisation wants to reduce the cost for researchers to access the expanded datasets that will be available via care.data to £1.

The HSCIC board paper identifies this objective as a risk, saying that while legal advice indicates that the effective removal of charges may be possible, there is a need to clarify principles with NHS England in terms of where charges would be reduced.

“It is also proposed that this should be discussed at the Informatics Services Commissioning Group to ensure that any wider implications can be understood,” it says.

“The Department of Health has provided guidance to confirm that the current approach (cost recovery) is in line with government policy. Discussions are underway with NHS England to agree a way forward.”