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Engagement campaign on patient data sharing launched by NHS England

by Eliza Parr
2 October 2023

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NHS England has announced £2m of funding for an engagement campaign to gather views from patients on how data in their GP record is used.

Through these events, the public will have a ‘genuine means of informing and shaping policy around the use of their health data’, according to NHSE. 

The events, running from the new year to March 2025, will seek public views on NHS data projects such as the Federated Data Platform (FDP), which sparked concern among GP leaders earlier this year.

NHS England awarded a £24.9m contract to US-based company Palantir to ‘transition’ existing NHS projects into the new platform, and the company is also the frontrunner to win the overall £480m contract. 

The FDP will enable NHS organisations to bring together operational data that is currently stored in separate systems to ‘understand patterns, solve problems and plan services for local populations’.

GP leaders cited concerns that contracts with multinational companies like this could damage the trust within the patient-doctor relationship.

NHS England has said its upcoming ‘large-scale’ events will allow patients to shape NHS digital and data transformation, and that the pandemic highlighted the importance of joined-up data.

National director of transformation Dr Vin Diwakar said: ‘Public support is integral to how we better use data to improve care – and the best way to do this is through effective and meaningful engagement. 

‘Over the course of next year, we will continue to highlight how data is used across the health and care system and it is vital that we involve the public in shaping future data use and how it can save lives.’

Chair of the Academy of Medical Royal Colleges Dr Jeanette Dickson said they welcome the ‘long overdue’ FDP.

She said: ‘With the system and staff under so much pressure and with so many patients on the waiting list, we must build on what we have rather than let the perfect be the enemy of the good. 

‘That said, there must, of course, be proper checks and balances in place, not least through adherence to GDPR and by ensuring proper data sharing agreements are in place between different parts of the healthcare ecosystem. 

‘We must be extremely vigilant to ensure this precious data is only put to the use for the clinical benefit of patients and the wider NHS system and we will sound the alarm if those fears aren’t addressed.’

In 2013, the Government announced plans for its programme whereby patient identifiable data would be extracted from GP records and sent to the Health and Social Care Information Centre, which later became NHS Digital – this data could then be anonymised and sent to customers such as NHS England. 

Initially GPs were expected to be solely responsible for informing patients about the programme, however NHS bosses later backtracked on this and announced a major £2m publicity campaign.

The flagship scheme was shelved last minute in 2014 and later scrapped altogether in 2016 following a series of concerns raised by GPs and patient groups.

Earlier this year, NHS England indicated it could become a co-data controller of patient records to help relieve individual GP liability.

A version of this story first appeared on our sister publication Pulse.