National Data Guardian for Health and Social Care Nicola Byrne has warned NHS England that it must ensure that it is fully transparent with the public about the aims and due diligence involved in the tender process for the Federated Data Platform (FDP) or risk undermining public support for the project.
In a pointed blog post ahead of the imminent announcement of the winner of the successful bidder for the contract to operate the platform, Byrne noted that public concerns about the FDP procurement process have been growing. She highlighted especially “contentious” discussion around the perceived frontrunner to win the £480 million tender, US data analytics giant Palantir.
Acknowledging the fact that “commercial interest in, and proximity to, NHS data often makes for an uneasy conversation”, Byrne observed that research shows it is possible to bring the public along with commercial involvement as long as certain conditions are met.
These include a commitment to “authentic communications, engagement, and transparency”; clear rationale for commercial involvement; proof that the external organisation is trustworthy and that there is a demonstrable public benefit to society and the NHS; public benefits that outweigh the commercial benefit; and “adequate safeguards against improper use.”
A lack of trust can lead to a knowledge gap, she warned, adding that “in this gap, alternative narratives can take hold, becoming a breeding ground for speculation, misinformation and discontent.”
Lessons learned from the implementation of earlier initiatives, such as the General Practice for Data for Planning and Research (GPDPR), and the National Programme for IT, underscore the centrality of engaging effectively with the public and professionals to maintain trust in how the NHS handles people’s data, Byrne added.
Byrne acknowledged that NHSE had provided her with a “high-level” plan for communications in the last week, and that the Professional Record Standards Body (PRSB) had also been commissioned to deliver an engagement project.
“These plans come later than I would have liked, but they are a start, and a step in the right direction, and I hope they can begin to bring more balance and perspectives to the public discourse,” she said.
A controversial procurement
Campaigners for equitable access to technology have argued that NHSE has insufficiently thought out its proposed FDP and risks endangering the safety and confidentiality of the personal data of millions of patients by entrusting it to a commercial partner that could be largely interested in monetising the data at a later point.
Many have criticised the procurement process itself, arguing that Palantir was left with a clear advantage due to its initial offer during the Covid-19 pandemic to help the government manage Covid data at no cost.
They also argued Palantir’s work with intelligence and security services in the U.S. made it a questionable choice for managing NHS England’s trove of personal health data.
NHSE’s decision in June to award Palantir a 12-month contract worth £25 million to “transition” its current projects with the health service to the new Federated Data Platform (FDP) supplier exacerbated the concerns of many that the FDP tender was not transparent.
In a blog post in November, Byrne appeared to provide an implicit warning about the expected award of the FDP contract to Palantir when she advised national policymakers that they should ensure key suppliers share NHS core values.
Although she was more muted in her comments on Thursday, she nevertheless warned the government to tread carefully.
“People have strong opinions about the involvement of technology giants in the NHS more broadly, with concerns about commercial propriety, ethics and motivation often expressed. Because of this, a genuine commitment to transparency is crucial, especially as the contract will be awarded against the backdrop of the COVID-19 inquiry,” Byrne said.
“Quite rightly, the public spotlight is firmly trained on how procurement decisions are being made in health and care. People want to know who is receiving public money and on what terms.”
Making the strongest case for the FDP
Byrne recommended three key tasks for the government in order to enhance public trust in the FDP as it prepared to announce the results of the procurement process: showing the likely, rather than hoped for, value to patients and the NHS; demonstrating the integrity of its decision-making process; and providing “credible assurance about the relationship with the supplier.”
As part of this process, she said, NHSE will need to articulate clearly, amongst other things, the purpose and scope of the programme, the nature of each use case and how the national data opt-out will work.
It will need to spell out what providers and ICSs expect from the FDP and the problems the FDP will aim to solve for those coordinating and delivering care in real-time.
Moreover, NHSE will need to address the concerns of those who worry the NHS will find itself locked into a relationship with a specific vendor, ensuring it can terminate the partnership “as and when necessary, without compromising patient care or incurring significant costs”.
Byrne acknowledged that NHSE had provided her with a “high-level” plan for communications in the last week, and informed her that the Professional Record Standards Body (PRSB) had also been commissioned to deliver an engagement project.
“This programme’s intentions are good, and I do not want the public discourse around it to become a polarised battleground,” Byrne said.
“But to avoid this, NHS England must address the knowledge gap: building bridges between the programme, the public and professionals on the ground. And this will involve listening, learning, and evolving the programme and its communications as it does so.”