The GPC is to hold urgent talks with NHS bosses about their flagship patient data-sharing programme after practices reported that ‘large numbers’ of patients have not yet received any information about the scheme.
GPC chair Dr Chaand Nagpaul said while the GPC still supported ‘the principle of using anonymised data’ for service improvement and planning, it was ‘deeply concerned’ that the public weren’t being adequately informed.
He said NHS England must ensure the public had been adequately informed and to produce evidence to support this, before any extractions take place.
The care.data scheme will see patient records being extracted from practices each month alongside identifiers such as postcode and NHS number which will be used to link the data with records from other parts of the NHS. A £2million leafleting campaign which saw an information leaflet sent to every household in the UK, ran throughout January, but it was widely criticised as ‘inadequate’ and lacking an opt-out form.
Dr Nagpaul cited a recent survey which revealed two thirds of the public haven’t received an information leaflet and 45% of the public didn’t understand the scheme from the information they had seen or heard. An earlier Pulse survey has shown that GPs are equally confused and that more than 40% plan to opt themselves out of the scheme.
He said in a statement: ‘GPs across the country are telling us that large numbers of their patients have not received any information, and therefore remain completely unaware that their data will be uploaded, whilst others remain worried about who will have access to it and what it will be used for.
‘The BMA continues to support the principle of using anonymised data to plan and improve the quality of NHS care for patients. However this must be done with the support and consent of the public, therefore patients must be made aware of what is happening to their personal information, what the proposals mean and what their rights are if they do not wish their data to be extracted.
‘The public awareness campaign has clearly not worked and today we call on the Government to ensure public trust in the system by properly informing the public about care.data before the currently planned data extracts commence, and produce evidence this has been achieved prior to upload taking place.
‘As a result we will be having urgent discussions with NHS England about what it can do to address the situation to improve patient awareness, so that patients are able to make a fully informed choice.’
The intervention follows mounting opposition to the scheme. An announcement from the RCGP last week demanded a fresh publicity campaign to address the ‘crisis in confidence’ in care.data, and warned the scheme risked ‘falling at the first hurdle’.