More than half of the public have still ‘never heard of’ NHS England’s flagship patient record-sharing scheme, care.data, despite it being delayed to ‘build public understanding’ of its benefits, an Ipsos MORI poll has revealed.
The results of the survey commissioned by the Joseph Rowntree Reform Trust Ltd also found that more than half of the public did not think the scheme should be run on an ‘opt-out’ basis.
It comes as the BMA’s Annual Representatives Meeting voted in favour of a motion stating that care.data should be opt-in only – a policy previously passed by the LMCs Conference.
The GPC has responded to the survey saying the figures demonstrate the ‘woefully inadequate’ understanding amongst the public, which NHS England had failed to address.
GP leaders added that an opt-out system could only ever be justified when patients can give ‘informed consent’ to opt out.
The survey of 1,958 UK adults found that 40% of the public thought their GP should only be allowed to share their data with explicit consent, and 13% said data shouldn’t be shared by GPs under any circumstances.
Around one in four – 27% – of the respondents said GPs should be able to share patient records if they had been informed and given a chance to opt out and 10% thought it should be shared even without informing them.
Just 3% of the public said they understood the care.data scheme very well, with 9% saying they understood a little. But 51% of the public said they had never heard of the scheme and 13% had heard of it but didn’t know what it was.
GPC negotiator and lead on care.data Dr Beth McCarron-Nash told Pulse: ‘The implementation of care.data has been a complete debacle, and although we’ve been given all sorts of reassurances, the problems are certainly not fixed. Certainly the whole issue of public awareness really has not been addressed.
‘Our position is very clear: an opt-out is only ever appropriate if all patients are able to give informed consent to opt out. And as this Ipsos MORI survey demonstrates, the level of information in the public is woefully inadequate and that must be urgently addressed.
‘The figures on opt-outs are extremely concerning, this survey appears to reflect that patients have a differing view to the public and are calling now for an opt in. That was the view of LMC conference and we wait to see what happens in the BMA debate.’
Motion in full
That this Meeting agrees that the care.data system should not continue in its present form as:
i. it lacks confidentiality and there is a possibility for individual patient data to be identified
ii. it carries the risk of GPs losing the trust of their patients who may feel constrained in confiding in them
iii. the future potential users of the data are not well defined
iv. it should be an opt-in system rather than an opt-out one
v. the data should only be used for its stated purpose for improving patient care and not sold for profit.