Care.data pilots delayed until January
Health data programme still awaiting sign-off from watchdog
The government has delayed the launch of its care.data pathfinder projects until next year, after originally planning to begin them this autumn.
Last October, NHS England announced it would run pilots in four areas after a disastrous attempt to launch nationally which was abandoned in March 2014.
The programme is intended to improve health outcomes by linking GP data with hospital admissions and other patient information, but has been dogged by concerns over consent and data security.
In a statement to Civil Service World, NHS England said: “Communication with the public will begin when the letters to patients are sent. We are not keeping to artificial deadlines and will send out the letters when the time is right.”
The programme is still waiting for sign-off by Dame Fiona Caldicott, the National Data Guardian and chair of the government’s Independent Information Governance Oversight Panel (IIGOP).
The NHS statement said that it is now expecting approval by Dame Caldicott by January. Each patient in pathfinder areas will be sent a personally-addressed letter and an information booklet explaining the programme and providing an opt-out form and stamped addressed envelope, the NHS statement said.
In late 2013, NHS England produced a leaflet intended to be sent to all homes nationally, informing the population about the project, despite the IIGOP telling it that the leaflet was not fit for purpose.
The NHS said that currently 121 practices in the four pathfinder areas – Leeds North, West and South and East, Somerset, West Hampshire and Blackburn with Darwen – have signed up to take part in the new trial. The NHS statement also added that there was no date yet set for national roll-out of the care.data programme.
“In line with the previously stated position, no artificial timeframes are being imposed by the programme. This relates to both the pathfinder stage and any wider roll-out,” the statement said.
In June, the Major Projects Authority gave the care.data project a red light, based on information compiled in September last year, implying that it was “undeliverable”.
However, the NHS told CSW that a subsequent review undertaken in February of this year reported the care.data programme as "Amber/Red", reflecting changes made to the project.
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