NHS Federated Data Platform Progress
Those with long memories will recall the time and money spent by the UK NHS in the early years of this century to build up some form of integrated patient IT solution (Connecting for Health). This was ultimately cancelled for reasons that included costs spiralling towards £10 billion and limited results.
NHS sources claim that it is the 6th largest employer in the World. Any attempt to bring together its disparate IT systems and still maintain patient privacy is going to be tricky.
In December 2023 NHS England awarded a contract to USA company Palantir to create an overarching architecture that will allow information to be collected and shared between different systems. Costs are currently (September 2024) estimated to be in the region of £485 million over 4 years. Existing systems should not need to be substantially reworked but these are expected to be onboarded within 2 years (late 2026). The NHS has allocated £8.5 million to consultancy firm KPMG to promote the adoption of the FDP amongst NHS trusts and Integrated Care Boards.
Sharing data between NHS systems would bring considerable benefits. Individual patient treatments would improve with clearer access to available beds, drugs and staff throughout the NHS. Trends and diagnoses will be easier with a wider information base.
There are also risks as sharing data between more outlets increases the risk of exposing confidential data. Much of the information, such as that used to analyse trends, will be anonymised but there will be many cases where full patient records are exposed to a wider audience than currently. There is also the possibility that as more information is available from a single point of access that an individual profile or even complete identity can be deduced from theoretically anonymised sources.
It is uncertain if individual patients can opt-out of having their data processed through the new system. The NHS states that there will not be an option to opt out but under current UK law that is not the case. Section 251 of the National Health Service Act 2006 requires the Secretary of State for Health to specifically rule that confidential patient information can be disclosed to a system such as the FDP. Foxglove, a UK non-profit community interest company that aims to fight technology abuse by big players, has launched a legal action against the sharing of data through the FDP. Foxglove is working on its action together with Just Treatment, the Doctors’ Association UK and the National Pensioners Convention indicating that there is resistance to the platform within the NHS. Amongst the arguments put forward is the claim that the FDP will offer little benefit in exchange for large sums of government investment. This brings us right back to the factors that shut down ‘Connecting for Health’.
