The case for treating health data as a competitive and strategic asset to improve health systems and fuel the economy is irrefutable. The collection of data, alongside ever-increasing capabilities to analyse and make use of them with artificial intelligence, is helping to guide clinical care, ensure operational efficiency, and drive research into new treatments and diagnostics.
In this vein, the latest innovation from the Tony Blair Institute for Global Change (TBI) is a tool that can map where data are generated across the UK’s health system; this in turn will help to guide efficiencies and uncover areas for discussion and development. Granted, the National Health Service (NHS) has been making progress on using data for better care and R&D, illustrated by the creation of secure data environments and the Federated Data Platform. However, despite these strides, data in the NHS are still fragmented, siloed and of variable quality. These data-infrastructure deficiencies drive the gap between what the NHS says it can do and what it can deliver, which contributes to poor care, stymies system change and harms public trust.
TBI has already been proposing some innovations that can help to solve these problems, so that the potential of utilising data in the NHS can be realised:
In A New National Purpose: Harnessing Data for Health, we urged the creation of a National Data Trust, an easy-to-access, transparent concierge service that would monetise access to health data in England.
The case for a single source of truth was made in Preparing the NHS for the AI Era: A Digital Health Record for Every Citizen. This would support personalised interventions and give patients control over their health.
To note, neither of these are silver bullets. If leaders are to deliver, these initiatives must be built on several preconditions, including public trust and adequate data governance. Understanding the stocking and flow of data is also key to this. As with 20th-century efforts to connect and manage the national grid, policymakers need a strategic plan to create data stores and amp up connections.
However, it is difficult to know where to start. Few have a clear picture of the problem – such as which data sets are inaccessible or even unusable – and fewer still have a plan to unlock data’s value. The UK is also behind the curve of other countries; the Duke-Margolis Institute for Health Policy in the United States, for example, reviews the technology and infrastructure required to enable the use of real-world data.
So, by way of a first step, TBI is working with Dr Joe Zhang – head of data science at the London AI Centre, who has previously mapped NHS data flows – to create a tool that maps where data are generated, extracted and used across the NHS (specifically on a national scale rather than at regional level). The aim is to provide an accurate schematic to inform public conversations about and policies on health data.
A condensed version of this data-architecture map is shown below. We have focused on national data flows that occur electronically and are managed systemically (in other words, whereby the same documented process is reproduced across all extractions and transfers). Across the middle of the map, the coloured cylinders show patient data that is generated by the NHS (with all inaccessible data condensed into one cylinder for each area of care). Data flows are represented by the lines, with the variation in line type representing the different ways data are transferred.
Condensed version of data-architecture map
Source: Source: TBI in collaboration with Dr Joe Zhang
The full data-architecture map allows users to interact with the different elements. Users can toggle the data flows that are represented in the diagram on and off, while more information on data sources and flows can be found in the navigation bar to the side.
The intended outcome for this work is to produce a common tool for researchers, officials and decision-makers that will inform discussions on NHS data. TBI will continue to work with experts to build informed, evidence-based proposals, develop the policies related to the data trust and digital health record, and show how the government can deliver at pace and with purpose. A key step towards this will be the ability to base our proposals on a solid understanding of the complex data architecture.
Call for Support: Can You Help Us Map the Data Architecture?
This work will only be useful if it is accurate. The scale of the UK’s health and social-care systems demands a collective effort to map the data architecture. To this end we have identified several data-flow gaps that need filling, whereby it would be useful to have additional expertise. The most prominent of these gaps are:
cancer screening
community pharmacy
adult social care
community care
e-referrals data access to hospital waiting lists
TBI will continue to iterate the data architecture to provide an accurate, open-source asset that can be used by a wide range of users. If you have expertise on any of the above areas of data collection and use, or have any feedback on the data architecture, please get in touch.