A CONTROVERSIAL data-sharing scheme blasted by Wigan’s health watchdog has come in for fresh criticism from health chiefs who say it has been “mishandled.”
Work to start compiling the largely anonymised records on to the Care.data database was meant to start in April but has been delayed for six months after it came under fire from Wigan’s health watchdog and GPs.
And the NHS has since revealed that details on hospital admissions from 1989 to 2010 were handed to the Institute and Faculty of Actuaries.
Now, the chairwoman of the panel set up to advise the NHS and ministers on the governance of patient information – Dame Fiona Caldicott – has said the public information campaigns were not clear enough.
She also said NHS England had not followed the IIGOP’s advice on making the text clearer on the leaflet designed to inform every household of the programme.
Last month, the watchdog group Healthwatch Wigan, chaired by former MP Sir Ian McCartney along with GPs, voiced its concerns over the plans.
A spokesman for Healthwatch Wigan said: “We recognise that medical research is vital in developing new drugs and new treatments and that sharing information and data can support such research.
“However patients need to be assured that their own personal information won’t be shared – it’s clear that at the moment many patients have concerns and for this reason NHS England need to act.
“As the NHS develop plans for greater integration – between GPs and hospitals and even between social care and health care – it needs to think very carefully about how it deals with patient information.”
In a statement, NHS England said: “We’ve been listening and acting on the views of patients, the public, doctors and others, and are making key changes in response.”
Dame Fiona remains convinced that collecting and making use of health data through programmes like Care.data will yield great benefits.
But she also feels the NHS has moved too quickly, and has not always taken patients with it in the drive to make use of data.
“I can understand how it happens but in general terms there has been too much haste,” she said.