Exclusive: GP practices piloting the rollout of NHS England’s controversial patient record sharing scheme will be expected to send letters to all of their patients, notifying them of their right to ‘opt-out’, Pulse can reveal.
NHS England has developed ‘template’ letters for GPs to send to patients in a bid to ‘support’ practices ‘in meeting their obligations under the Data Protection Act’, according to minutes of the scheme’s programme board meeting.
Meanwhile Tim Kelsey, NHS England’s national director for patients and information, told the commons health select committee on Tuesday that the letter would be trialled in 500 ‘pathfinder’ practices, ahead of a full roll-out of the scheme.
However the GPC has argued that that responsibility for notifying patients should lie with the Government, rather than practices having to ‘fork out money to fund the government’s agenda’.
NHS England faced a backlash from GPs and campaigners when it insisted last year that the responsibility for informing patients about the scheme would fall solely on GPs and it was instead forced to launch a £2m publicity campaign. However an ‘inadequate’ public engagement saw the initial launch of care.data fail, with more than two-thirds of the public saying they had not received an NHS England information leaflet which arrived at some households inside junk-food menus.
NHS England’s chief data officer, Dr Geraint Lewis told Pulse that NHS England had previously paid for ‘a leaflet to every home in England’ and was ‘now exploring other options.’ However it was still in the ‘testing’ phase and Dr Lewis couldn’t confirm whether GPs would have the same obligation under the full roll-out of the scheme.
Dr Lewis said: ‘Using a pathfinder group of GPs we will be testing various communications including a letter to find out what works best for patients and is manageable for GPs. However at this stage we are not ruling anything in or out.’
An NHS England spokesperson said it was unable to share the leaflet with Pulse.
Under the Data Protection Act, GPs as the data controllers for their patient’s records have a ‘fair processing’ obligation which requires them to make patients aware of any changes to the use of the records currently held by the practice. The Information Commissioner’s Office has warned that GPs who fail to adequately meet these requirements could potentially face fines.
However GPC negotiator and lead on care.data, Dr Beth McCarron-Nash told Pulse that she had made it clear to Tim Kelsey and NHS England that GPs should not have to ‘fund’ care.data.
Dr McCarron-Nash said: ‘It is the government who has changed primary legislation to enable the release of information from patient records; therefore – if they’re the ones who want the data – they’re the ones who should fund the information campaign.
She added: ‘The funding into general practice has been falling year on year, and it should not be the responsibility of GP practices to have to fork out more money for a Government agenda.’
‘They want the data, I believe they should be funding a comprehensive information campaign for patients, and that’s what we’ve been calling for, and that’s what we’ll continue to ask for.’
In addition, a recent report by the Imperial College London has recommended that NHS England should manage a website for patients to register their wish to opt-out of the scheme.
The report was presented to the National Information Board – the organisation chaired by Tim Kelsey who incorporate the care.data programme board and set national IT strategy – who said these recommendations will contribute to their future ‘strategy development’.
The Peter Sowerby Commission Report; ‘Bringing Together Primary and Secondary Care Data to Improve Patient Care’ states: [In the case of care.data] NHS England should establish a website allowing patients to opt out of, or back into, national data collection schemes and receive confirmation that this has happened.’
It also recommends that the Department of Health should ‘ensure through legislation that only NHS or accredited academic organisations receive access to the highest-risk databases, especially care.data.’
Pulse reported last month that over half the public were still unaware of the scheme. It also revealed a number of GPs, including Dr Gordon Gancz from Oxford, have plans to automatically opt their patients out of the scheme if it proceeds as planned.
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04 December 2023
04 December 2023