NHS England needs to work with the public, medical staff and third sector organisations if it wants its Federated Data Platform (FDP) to succeed, the UK’s National Data Guardian Dr Nicola Byrne has said. In a recent blogpost, Byrne argued that the health service must get better at communicating both why the new platform is needed and the role of private companies like Palantir in its construction.
The aim of the FDP is to connect the multitude of IT systems throughout the health and care sector in the UK. This will make it easier for frontline staff to access tools and information on patients in a safe and secure way.
Despite this, NHS England has come under intense criticism from privacy campaigners for a perceived lack of transparency in the FDP’s bidding process and the methods by which patients will share their personal data with the new platform. While patients cannot prevent their data being shared with the health service when required to support the delivery of care, they do have the right to deny collection for “secondary use purposes.” A large number of patients opting out in this way could impair the ability of the FDP to deliver on some of its core functions, such as improving the delivery of care across the NHS and anticipating longer-term risks to public health. Recent history suggests this is a risk. An earlier system called the General Practice Data for Planning and Research, abandoned in 2016, saw 1.6m NHS patients opt out of secondary data collection, while a YouGov survey conducted in May found that 48% of respondents said they would opt out of the FDP if it was “introduced and run” by a private company.
These concerns were echoed by Byrne. “In the past, some people have registered type 1 and national data opt-outs as a way to demonstrate their lack of trust in how a specific programme or initiative is handling their confidential data,” she wrote. “If opt-out rates now rise considerably further, it would be to the serious detriment of health research and planning nationally.”
The fact that Palantir is a leading bidder for the £480m data sharing project has also knocked confidence in the FDP. Critics have argued both that the relationship between the NHS and the US tech giant since the pandemic has not been transparent, and the ability of Palantir to help build the FDP remains unproven, pointing to several cases where pilots of its existing ‘Foundry’ software in NHS Trusts have been paused or suspended. In response to a longread published by Tech Monitor on the relationship between the two organisations last summer, NHS England insisted it was “conducting an open and transparent procuring process” for the FDP. A statement by health minister Will Quince has since clarified the reasons behind the suspensions and pauses of Foundry pilots, which included strike action, operational pressures and a lack of capacity on the part of individual trusts to integrate the software.
A need for transparency
The aforesaid objections to the FDP from patients could be overcome, suggested Byrne. “If designed and delivered correctly, this new system could have a transformative impact on the NHS and help support its sustainability longer-term,” wrote the National Data Guardian. “However, unfortunately but understandably, it has been receiving some negative attention that merits a thoughtful, considered response.”
Communication seems to be the key to getting the public on board with private involvement in a public data sharing project, Dr Byrne wrote. She explained that in order to successfully sell the FDP to the public, NHS England needed to work out the finer details of its communications plan and focus on clarifying the benefits of the new platform in three areas: its likely value for patients; the integrity of decision-making at the heart of the system; and assurances about the service’s future relationships with those companies helping to build the new platform.
“Transparency, openness, and a clear presentation of the facts will be key to success here,” she wrote. “Whilst explaining the FDP’s planned benefits is important, so too is confronting risks and concerns. This allows people to weigh up the facts and draw their own conclusions. I understand this may involve taking risks with communications.
“Committing to transparency also requires some boldness in acknowledging unknowns. It’s OK to say you don’t have all the answers yet or that procurement laws prevent disclosure. But it is important to say it. Staying silent on certain areas, even for a good reason, can lead to suspicion of deceit, with people becoming more influenced by what they believe is being withheld rather than what is being shared.”
Sam Smith, policy lead for MedConfidential, told Tech Monitor that while the NDG’s advice is useful, it will only be effective if NHS England listens to all of it and not just the bits they want to hear. “Managers at NHS England have repeatedly told different people only the things they won’t object to, and these programmes then collapse when those different stories don’t line up,” Smith explained. “The underlying problem is that NHS England believes it can do anything it chooses with patient data, and doesn’t have to tell patients what it does.”
NHS England did not respond to Tech Monitor‘s request for comment.