NHS England and the Department of Health and Social Care (DHSC) have been urged to provide clear information and to ‘dispel myths’ to gain public support for the Federated Data Platform (FDP) by the National Data Guardian.
In its annual report, the National Data Guardian set out what advice and guidance it had issued in the previous financial year (2023/24).
In this, it said it ‘consistently urged’ the DHSC and NHS England to ‘improve efforts’ to provide clear information about the FDP over the year, and to learn lessons from previous programmes that did not do this and ‘suffered’ as a result.
‘The public needed to be reassured on the safeguards and benefits,’ it said. ‘Without these reassurances, there was a risk of another upward spike in the national data opt-out rate, which would have serious consequences for health research and planning.’
It said that NHS England had listened to this and launched an engagement portal in November 2023 where the public could read information and submit questions.
It added: ‘While it is hard to quantify the impact of our advice, this more measured public response likely reflects NHS England’s engagement with the advice of the NDG and other stakeholders who stressed the importance of clear communication.
‘Prioritising transparency is always the right approach, so it is encouraging to see NHS England preparing additional FDP-specific materials, such as an animation, to further enhance public understanding.’
The report said that given the scrutiny the programme is under, that the NHS ‘must maintain a transparent approach to its communications’.
‘The National Data Guardian will continue advising NHS England on the FDP during 2024-25 via the dedicated IG [information governance] sessions and the oversight groups it has established to gain independent advice,’ it said.
It comes as two thirds of ICBs have now signed up to the FDP, according to NHS England.
The FDP has been the subject of controversy, with confusion about whether primary care data would or would not be included in the platform.
Before the election, the now health secretary Wes Streeting said the rollout of the FDP had been ‘too permissive’ and ‘lazy’.
The platform is supplied by a consortium led by tech company Palantir, which includes Accenture, PWC, Carnall Farrar and NECS. It was awarded the £330m seven-year contract in November 2023 following a procurement process.
In February, legal proceedings against NHS England were launched by law campaigners in a bid to ‘uncover’ the contents of the contract, which resulted in an updated contract being published in March with fewer redactions.
The BMA and its GP committee also previously expressed concerns over the high value of the contract and particularly how confidential patient data will be used.
Access to records
The National Data Guardian report also highlighted that 97% of GP practices (6,033) had enabled prospective records access as of September 2024, which was up from 80% (5,234) of practices in October 2023.
The deadline for GP practices to switch on the functionality which enabled patients to access their records via the NHS App was 31 October 2023.
It said that the NHS England support programme for this change had formally closed on 31 March 2024, so the implementation for the remaining practices was now being supported by ICBs.
In June, a report suggested that inconsistent data infrastructure across ICSs in England was risking quality of care and increasing inequalities, and that there was an administrative burden on ICSs due to multiple instances of patient data across systems.
