NHS national data guardian Dr Nicola Byrne has advised national policymakers that they should ensure key suppliers must share NHS core values.
The guidance, provided as part of a blog on advice she has been offering on the proposed new federated data platform, appears to provide a warning about the expected award of the contract to Palantir, due to the risk of undermining public confidence.
“I have also counselled that the programme should remain mindful of the NHS’s core values, and how the track record and values demonstrated by any organisations procured to deliver on a large-scale data programme align with them,” Byrne said.
Palantir, which is the incumbent supplier, has been a lightning rod for concerns about the national patient database project, due to its close links to US national security agencies and right-wing founder Peter Thiel.
In a November blog post entitled ‘In pursuit of balance: unlocking the power of data whilst preserving public trust’, Byrne first makes clear her support for the aims of the national data platform project.
She said: “I strongly agree with the aims and ambitions of NHS England’s federated data platform (FDP) programme.
“Improving timely, meaningful access to high-quality data, visualised in a way that supports more informed decision-making by those empowered to use it, is key to improving health and care access, outcomes, and experience for all.”
The challenge of information governance she states is one of ‘balanced judgement’.
“Sealing this precious asset in a vault where it cannot be used would render it worthless. However, making the data available in ways that damage patients’ trust would be counterproductive,” she claimed.
“If people lose their trust in how the health and care system handles their confidential data things will fall apart, and plans for data use will not hold.”
As the procurement heats up for the eco-system of technologies required to deliver the FDP programme, Byrne says these difficult balanced judgements and trade-offs are coming to the fore.
In making these key decisions she says past mistakes, most notably those surrounding care.data, must be avoided.
“This data programme must avoid common pitfalls around trust and transparency that have frustrated previous initiatives in this area.”
She continues: “Public trust can only be earned through a commitment to honesty and transparency. There must be no surprises for people about how their private information is being used.”
The NDG sets out the key advice she and her team have been providing to NHS England to ensure that there are no surprises and public trust is maintained.
“I have made clear that NHS England needs to allow sufficient time to listen to patients and professionals and then adapt plans according to what it hears.
“I have advised that the programme must be transparent and always strive to provide clear, easy-to-understand explanations of the platform, what data it will use, how it will use it, the benefits of the programme, and, just as importantly, the risks.”
She says that, in response, those leading the programme have provided assurance that research will be carried out with the public “to determine what information people want and need about the programme”.
“This will inform its communications and engagement plans, which it [the programme] has committed to share with me for review.”
Dr Byrne says that as NDG her role is to offer advice and guidance and that “ultimately, decisions around the FDP’s procurement rest with the Department of Health and Social Care and NHS England”.
“To date, I’m pleased to say those running the programme have listened and responded thoughtfully to my advice.”
She adds: “Just as my predecessor, Dame Fiona Caldicott, sought to do with the care.data programme, I shall continue to stress the importance of public and professional confidence for the FDP programme’s success.
“And as a psychiatrist (like Dame Fiona), I’d also stress the importance of learning lessons from history to avoid repeating mistakes.
“The care.data programme failed when it could not provide satisfactory answers to a series of questions and tests set by Dame Fiona, including key ones around transparency and the clarity of policy and communications. “
Dr Byrne concludes: “I hope the NHS will keep this lesson in mind and engage with these critical themes from the outset, so that the FDP programme succeeds in inspiring confidence and support where care.data did not.”
Dr Nicola Byrne will be speaking in March at Digital Health Rewired 2023, which takes place at the Business Design Centre in London.
She spoke at the previous edition of Rewired earlier this year, where she told the audience that data initiatives and organisations must ensure that they are able to demonstrate what they are doing with the information is ‘actually trustworthy’.