NHS nationwide knowledge guardian Dr Nicola Byrne has suggested nationwide policymakers that they need to guarantee key suppliers should share NHS core values.
The steering, offered as a part of a weblog on recommendation she has been providing on the proposed new federated knowledge platform, seems to offer a warning concerning the anticipated award of the contract to Palantir, because of the threat of undermining public confidence.
“I’ve additionally counselled that the programme ought to stay conscious of the NHS’s core values, and the way the observe file and values demonstrated by any organisations procured to ship on a large-scale knowledge programme align with them,” Byrne mentioned.
Palantir, which is the incumbent provider, has been a lightning rod for considerations concerning the nationwide affected person database challenge, on account of its shut hyperlinks to US nationwide safety businesses and right-wing founder Peter Thiel.
In a November weblog put up entitled ‘In pursuit of balance: unlocking the power of data whilst preserving public trust’, Byrne first makes clear her assist for the goals of the nationwide knowledge platform challenge.
She mentioned: “I strongly agree with the goals and ambitions of NHS England’s federated knowledge platform (FDP) programme.
“Bettering well timed, significant entry to high-quality knowledge, visualised in a approach that helps extra knowledgeable decision-making by these empowered to make use of it, is vital to bettering well being and care entry, outcomes, and expertise for all.”
The problem of knowledge governance she states is one in every of ‘balanced judgement’.
“Sealing this valuable asset in a vault the place it can’t be used would render it nugatory. Nonetheless, making the info out there in ways in which harm sufferers’ belief could be counterproductive,” she claimed.
“If folks lose their belief in how the well being and care system handles their confidential knowledge issues will disintegrate, and plans for knowledge use won’t maintain.”
Because the procurement heats up for the eco-system of applied sciences required to ship the FDP programme, Byrne says these tough balanced judgements and trade-offs are coming to the fore.
In making these key selections she says previous errors, most notably these surrounding care.knowledge, should be prevented.
“This knowledge programme should keep away from frequent pitfalls round belief and transparency which have annoyed earlier initiatives on this space.”
She continues: “Public belief can solely be earned by means of a dedication to honesty and transparency. There should be no surprises for folks about how their non-public info is getting used.”
The NDG units out the important thing recommendation she and her crew have been offering to NHS England to make sure that there are not any surprises and public belief is maintained.
“I’ve made clear that NHS England wants to permit adequate time to hearken to sufferers and professionals after which adapt plans based on what it hears.
“I’ve suggested that the programme should be clear and all the time try to offer clear, easy-to-understand explanations of the platform, what knowledge it is going to use, the way it will use it, the advantages of the programme, and, simply as importantly, the dangers.”
She says that, in response, these main the programme have offered assurance that analysis can be carried out with the general public “to find out what info folks need and wish concerning the programme”.
“This may inform its communications and engagement plans, which it [the programme] has dedicated to share with me for evaluation.”
Dr Byrne says that as NDG her function is to supply recommendation and steering and that “ultimately, selections across the FDP’s procurement relaxation with the Division of Well being and Social Care and NHS England”.
“Thus far, I’m happy to say these working the programme have listened and responded thoughtfully to my recommendation.”
She provides: “Simply as my predecessor, Dame Fiona Caldicott, sought to do with the care.knowledge programme, I shall proceed to emphasize the significance of public {and professional} confidence for the FDP programme’s success.
“And as a psychiatrist (like Dame Fiona), I’d additionally stress the significance of studying classes from historical past to keep away from repeating errors.
“The care.knowledge programme failed when it couldn’t present passable solutions to a collection of questions and exams set by Dame Fiona, together with key ones round transparency and the readability of coverage and communications. “
Dr Byrne concludes: “I hope the NHS will preserve this lesson in thoughts and interact with these essential themes from the outset, in order that the FDP programme succeeds in inspiring confidence and assist the place care.knowledge didn’t.”
Dr Nicola Byrne can be talking in March at Digital Health Rewired 2023, which takes place on the Enterprise Design Centre in London.
She spoke at the previous edition of Rewired earlier this 12 months, the place she informed the viewers that knowledge initiatives and organisations should be sure that they’re able to display what they’re doing with the data is ‘truly reliable’.
