Patients will be given the right to withhold identifiable data from being extracted from GP records under proposed changes to a Government scheme to create a central NHS patient data service.
Under the proposals, patients will be able to refuse having certain types of identifiable data uploaded using the NHS Extraction Service, even if practices give their consent to do so.
The GPES will replace the QMAS reporting system for QOF payments from April 2013, with data also planned for secondary purposes, such as research.
The proposal comes after Pulse revealed the UK's biggest GP systems supplier, EMIS, wrote to its customers seeking consent for their data to be streamed to the central reporting service network.
An NHS Information Governance Board (NIGB) paper, seen by Pulse, admits large scale opt-outs could ‘damage' the scheme and promises to reinforce patient trust if this happens.
The document says: ‘This is to articulate the intentions of the GPES Project to enable patients to opt-out of certain types of disclosures of patient identifiable data from their general practice records.'
Although minutes from the board's April meeting warned: ‘Very high uptake of the opt-out marker might damage the ability to conduct meaningful research.
‘Large scale opt-outs, whether large numbers of individual patients or whole GP practices, would be investigated to assess communication with affected patients in an effort to reinforce patient trust in the system.'
Dr Neil Bhatia, a GP in Hampshire, who submitted the FOI request, said the Government had to launch an information campaign in order to prevent ‘degradation in confidence' between GPs and patients.
He said: ‘The Government and Information Service say they will launch a campaign to inform patients, but they are never adequate, like with the Summary Care Records. The only information patients got was from their own GPs.
‘It will be down to GP practices to make it clear that their information is going to be used in more ways than just to look after their care.'
