The RCGP has intervened dramatically in the row over NHS England’s flagship NHS data-sharing scheme, saying that managers must ‘act immediately’ to address GP and patient concerns over the programme.
The College said in a statement published today that a new national information scheme is needed ‘urgently’ and that the scheme is at risk of ‘falling at the first hurdle’ due to a failure to communicate the potential benefits of the scheme.
The call came as the GPC also expressed concerns over the way the programme was being run, suggesting that NHS England should delay the first extraction next month to ensure that patients were adequately informed.
Care.data will see patient records extracted from all GP practices, linked to secondary care data and made accessible to researchers and private companies.
Supporters of the scheme have argued it will have significant benefits for both commissioning services and medical research, and NHS IT chiefs have insisted that patients’ data will usually only be shared in anonymised or ‘pseudonymised’ form, with any releases of identifiable data subject to strict privacy safeguards and a public interest test.
RCGP honorary secretary Nigel Mathers said that although the college remained supportive of care.data ‘in principle’ there was a ‘crisis in public confidence’ over the way it was being implemented.
He said: ‘The inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing.
‘We urgently need a renewed national push by the authorities to ensure that patients are fully informed, in clear terms, about the benefits of the scheme, what their rights are, and what their rights to opt out are.’
He added: ‘The Government and NHS England need to act immediately, otherwise further questions will inevitably be asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed.’
The move comes after Pulse revealed that over 40% of GPs intend to opt themselves out of care.data scheme, and that as few as 15% of patients and just half of all GPs and practice staff understand the care.data scheme despite a national campaign to inform the public that records will shortly be extracted from GP practices.
GPC deputy chair Dr Richard Vautrey told Pulse said that negotiators were also ‘disappointed’ in the way that the publicity campaign was being conducted and that NHS England needed to communicate ‘openly and honestly’ with patients.
He told Pulse: ‘We have been disappointed in the way that the leaflet campaign has not reached every household, often sandwiched between pizza leaflets and other types of junk mail. So that many patients won’t have read it.
‘Those that have read it, it’s not being clear enough to patients what the pros and cons of opting out really are, and what the care.data project is all about.
‘I think we do need to see a much more open and honest, and transparent information sharing with patients for them to make an informed decision about what they do in these situations.
‘I don’t think it’s been handled at all well, and I think we need to go back to first principles. If that takes time to do then it should be given the necessary time to do it. If the project is sound enough, then it will sell itself. If there are concerns, then patients will recognise this and opt accordingly.
‘I think we have to take as long as necessary, and I think we shouldn’t be pressured into a spring or April deadline.’
Dr Tony Calland, chair of the BMA’s Ethics Committee said: ‘After pressure from the BMA, NHS England has carried out an information campaign including sending an information pack to every practice in England which contains posters for the surgery. It has also organised a leaflet drop to every household in England. This campaign has been extensive, but the BMA recognises the importance of ongoing communications with patients, especially as some GP practices have reported that not all patients are fully aware of their options.’
A spokesperson for NHS England said: ‘We’re absolutely committed to ensuring the public are aware of the benefits of this initiative and their rights to opt-out. This is why we have sent a leaflet to every household in England. We have also provided leaflets and posters to every GP practice; articles in all the major newspapers; information on the NHS Choices website; information via social media; a video animation; as well as information cascaded via 350,000 patient groups and charities.
‘This is an ongoing exercise of engagement. We are actively talking with doctor’s groups, patients and charities about how we can better and further explain this programme and people’s right to opt-out. Throughout this programme we have met with the RCGP and will be meeting with them again soon to discuss their concerns.’