The UK National Health Service (NHS) is the largest nationalized health service in the world, providing healthcare services to around 65 million people. This huge responsibility means that it is constantly exploring new technological solutions that will allow it to work more efficiently and improve patient outcomes.
It also handles a huge amount of very sensitive data. Traditionally, this data – consisting of personal health records, clinical data, and public data – has been stored in separate systems spread across hundreds of healthcare and hospital trusts. Its aim is to implement what is known as the NHS Federated Data Platform – to bring all of this information together into a single source where it can be used to improve decision-making and patient outcomes.
Inevitably, this will bring many challenges. Healthcare data is some of the most sensitive data that there is, and the task of keeping it secure while still ensuring that it’s accessible when and where it’s needed is no simple feat. On top of that, the sheer scale of the data involved means that creating the platform will involve solving a number of complex engineering challenges.
Why Does The NHS Need Data?
Data helps any organization gain a better understanding of the world it operates in, and ultimately to make better decisions. Right now, Artificial Intelligence (AI) is proving to have many beneficial uses in healthcare. The NHS has launched a number of initiatives and projects that involve harnessing this technology to automate time-consuming processes involving data analysis, more accurate diagnosis of illness, and personalized medicine and treatments.
It already operates the NHS AI Lab, which carries out research into potential uses of the technology in healthcare, and awards grants to enable the work of external organizations. So far, it has handed out around £100 million ($120 million) to 79 projects.
In another AI initiative, the NHS has collaborated with Nvidia and a number of other partners to roll out the AI Deployment Engine (AIDE) tool across several hospital trusts. AIDE is built on the open-source MONAI computer vision framework and enables speedy analysis of medical imagery to assist in the diagnosis of conditions including Covid-19, breast cancer, brain tumors, dementia, and strokes.
Additionally, DeepMind – a subsidiary of Google’s parent company, Alphabet – harnesses NHS data to predict when patients are at risk of developing kidney failure.
The Federated Data Platform aims to bring the data that makes all of these projects together into one centralized system. As the NHS puts it, this will enable it to “understand patterns, solve problems and plan services for their local populations.”
Who Will Build and Manage the Data Platform?
The UK government has just begun the tender process to find the specialists that will build and manage the platform in its first five years of life, valued at £360 million ($430).
Controversially, it’s believed that US-based data analytics company Palantir – which currently manages the UK’s existing Covid-19 data platform, that will be integrated into the new system – is among the frontrunners. This has caused concern as Palantir was established as a surveillance entity, and its history has been built on its ability to supply governments, including the US government, with information for use in law enforcement, warfare, and policing of immigration. A petition calling for an end to the partnership between Palantir and the NHS accuses it of helping “governments, intelligence agencies, and order forces to spy on innocent citizens and target minorities and the poor.”
Questions have also been raised about who else will be allowed to access the extremely valuable and potentially useful data in the system. It’s known that organizations – including DeepMind (Alphabet) – have been given access to anonymized patient data in order to develop tools and applications that have been used to save lives. We know that individuals are often highly protective of their personal healthcare data, which is traditionally seen as very private. But will this continue to be the case if, as it seems, new technologies are increasingly able to unlock insights that can treat or cure a growing number of conditions? The rollout of the Federated Data Platform and, crucially, the public response to it might enable us to answer some of these questions.
There has been criticism of the project due to its sheer cost – the initial investment of £380 million is widely expected by those with experience of previous NHS IT projects to increase, perhaps to as much as £1 billion ($1.2 billion) in its first decade. Just one year ago, the cost was estimated at £240 million ($288).
This has caused concern as it may divert funding from smaller IT projects within the individual healthcare trusts that make up the NHS. It’s been reported that 25 percent of these trusts have not yet implemented basic electronic patient records. Without these in place, it’s unclear how they will be able to integrate with the new platform.
Perhaps the most pressing issue, however, involves concerns that making data too widely available could lead to an erosion in public trust around centralized data projects in healthcare. Many people – myself included – believe that technology, specifically in this case data, AI, and analytics, has tremendous potential when it comes to pushing forwards the boundaries of what’s possible with science and medicine. We have already seen the benefits of this in drug and vaccine development, service planning, and many other areas of healthcare. However, if trust is broken, and due to lack of oversight or regulation, data ends up in the hands of those with less than altruistic motivations, people will become less happy about allowing health services to collect and share their data. There’s a very real danger that this could result in future advances stalling.
To make sure this doesn’t happen, it’s essential that the processes put in place for collecting, storing, using, and sharing the data are transparent at every step. As the UK’s national data guardian for health and social care, Dr. Nicola Byrne has stated, “There must be no surprises for people about how their private information is used … the program 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 program and just as importantly, the risks.”
Is This The Future of Data in Healthcare?
The success or failure of the NHS Federated Data Platform is likely to have important ramifications for the future of centralized healthcare data projects around the world. The UK is fairly unique in having a nationalized healthcare service that serves such a large population. But if it is able to show that taking a coordinated approach to data can result in concrete benefits to public health, it could motivate players in other markets to consider working together. Whether or not this happens is likely to depend on whether those responsible for implementing and running the project show that it can generate concrete benefits without compromising the trust of UK citizens. In addition, they will have to show that costs – which have a tendency to spiral within vast, nationalized organizations like the NHS – can be kept under control. If all of this works out, then the federated data platform could be an important first step towards convincing the world that a centralized, coordinated approach towards healthcare data can be beneficial to us all.
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