The mishandling of the controversial Care.data scheme – intended to extract data from GP records and effectively share it with world+dog – was in part due to the refusal of NHS England to recall an ill-informed public leaflet from the printers, an independent oversight body has revealed.
Care.data was supposed to begin in spring 2014, but has been subject to a series of delays following a public outcry regarding the NHS's failure to properly consult on the programme.
Many have objected to the possibility of private companies having access to NHS patient data under the scheme.
According to the first annual report from the Independent Information Governance Oversight Panel, NHS England showed the body the leaflet it intended to inform the public with ahead of its January 2014 distribution date.
A copy of the intended leaflet was sent to IIGOP shortly before the quarterly meeting of the panel on 9 December 2013, it said.
"On the following day IIGOP advised NHS England that its leaflet was not fit for purpose, but was informed that it had already been sent to the printers and would not be recalled."
The panel said when the leaflet was distributed it raised more questions than it answered, triggering debate in the media and in Parliament, with many other people reporting never to have seen it.
The body is chaired by Dame Fiona Caldicott, who was also responsible for carrying out two independent reports about sharing patient information in light of the Care.data debacle.
Of the 26 recommendations laid out in Caldicott's report on data sharing last April, the IIGOP found health and care organisations had only made good progress on six.
"The report card at the end of the first year after the government’s acceptance of the Information Governance review reads: must try harder," it said. ®