Health managers have admitted they have been unable to implement 700,000 patient opt-outs to GP data being shared, with GP leaders claiming that their admission demonstrates the ‘mess’ that the Government has created.
The Health and Social Care Information Centre has said that 700,000 patients registered an objection to their identifiable information being passed from the HSCIC to a third party before the aborted rollout of care.data in March 2014.
However, it admitted that it doesn’t currently have the resources to deal with this volume of objections.
It has also said it has been unable to solve the problem with the wording of the opt-outs that prevents patients from being informed about essential services such as e-prescribing, bowel screening, e-referrals or e-pathology if they were implemented as is.
GP leaders said that their admission demonstrates the ‘mess’ that the Government has created and that more patients are likely to opt out of data being shared once care.data has been fully rolled out.
The information centre’s admission about the 700,000 ‘Type 2’ objections – those that prevent the HSCIC from sharing data with third parties – came in evidence presented by HSCIC chair Kingsley Manning to the House of Common’s Health Committee inquiry into care.data in February, which was revealed by the committee last month.
He said: ‘Initial work with GP system suppliers suggests that perhaps as many as 700,000 Type 2 objectives have already been registered, but this number needs to be verified and we are undertaking further work to do this.
‘The HSCIC does not currently have the resources or processes to handle such a significant level of objections.’
The evidence also revealed that the HSCIC is struggling to deal with a problem around the wording of Type 2 objections.
This came about because the patients have objected to any HSCIC data being shared with third parties, but such sharing of data is essential to analyse which patients need to be targeted for certain services.
In the submission, Mr Manning admitted that solving these problems ‘may take some time’.
He said: ‘We will not be in a position to implement the Type 2 objections currently registered with GPs until this work is complete and we must be certain that any proposed solution cannot have any detrimental impact on a patient’s direct care.’
Mr Manning added: ‘We are extremely concerned that the implementation of individuals’ wishes with respect to their data has been significantly delayed, although we are confident that this delay has not had any detrimental impact on their clinical care.’
Dr Neil Bhatia, a GP in Yateley who worked to raise awareness of care.data opt outs through his NHS Databases website last year, told Pulse that patients are likely to resume opting out when the care.data pilots commence.
He added: ‘NHS England seem to have seriously underestimated the number of people who would opt out… did they seriously think that just a handful of people nationwide would object?’
Dr Beth McCarron-Nash, who leads on care.data for the GPC, told Pulse: ‘Obviously, if there are technical difficulties that HSCIC are experiencing, they must be resolved, and it is their responsibility to make sure patients are protected. But basically it’s a mess.’
Phil Booth, director of data rights advocacy group medConfidential who also sit on the care.data advisory group, told Pulse: ‘The material fact is, hundreds of thousands of people, last January, February, March, exercised their right to opt-out of having their data passed on by the HSCIC, and that has not been respected.’
In an attempt to simplify the process, the Care.Data Programme Board – which is overseeing the Government’s flagship scheme – recommended that there should only be one type of opt-out to data being shared, dropping these ‘Type 2’ objections before the full rollout of care.data.
It instructed the HSCIC in November last year to ensure that patients who had already registered this objection had their wishes adhered to.
In the evidence, Mr Manning said the HSCIC discovered the problems around the number of objections and the wording of the objections when carrying out this work.
The HSCIC declined to comment further.