Investing in the foundations of HDRS 

The UK holds some of the world’s richest health data, but that data is fragmented, making it difficult for researchers to access, connect and study at scale. This is holding research and discovery back. HDRS has been established with a clear mission: to unite the UK’s health data for research that will change lives for the better.   

HDRS will be built transparently, in partnership with the existing health data ecosystem, and always with patients and the public as our north star. Today, we take our first steps towards our goal – strengthening the foundations on which we can build the service. Through our technology transformation projects, we are investing in technologies and capabilities that can enable data held in secure data environments across the UK to be connected and used, while maintaining the safety and security safeguards which protect that data. 

Data does not need to be held in one place for it to be available at UK-scale. These projects begin to explore “federated” analysis models that will enable researchers to study data without needing to physically store it all together. There’s no single way to do this, so we’re supporting a range of projects, each taking a different approach, so we can learn what works effectively. 

Our aim was to build a portfolio of projects that work together, learning from what works well and has the potential to scale up – that would collectively leave the UK’s network of secure data environments better off overall than any single award could manage alone. 

We are supporting a total of 43 projects across five broad themes: 

Unlocking data that’s currently out of reach 

Richer data allows for a more complete picture of health and illness – helping researchers uncover insights that wouldn’t otherwise be possible. But a huge amount of valuable health data simply isn’t available for research yet, so we are funding projects that will change that. For example, projects that will make new pathology and microbiology reports, primary care data, genomic variant data and ambulance records available for research. 

Data needs to mean the same thing to everyone 

You can’t compare or learn from data held in different places if the same clinical concept is recorded differently in each one as the data becomes impossible to compare. That’s why the largest single group of projects we’re investing in are about standardising and harmonising data. For example, one project that will align major electronic health record systems and make sure cardiovascular, renal and metabolic definitions mean the same thing across all of them.  

Better information governance  

Information governance is the strategic framework of policies, processes and standards used to hold data, ensure its security and manage access. It’s tempting to see this as the thing that slows technology down, but in a federated network, it’s good information governance that makes the network work at all. 

We’re helping the regional secure data environments and devolved administrations become more consistent – developing reusable blueprints for decisions on data release, uniform governance and enquiry frameworks, and standardising the approach to handling changes made to already approved research studies on ethical grounds.  

Clinical trials: funding the plumbing 

Participating in research can help people live healthier and better lives – now and in the future.  Through clinical trials, patients are able to access cutting edge treatments sooner. The UK’s ability to run clinical trials at speed depends on infrastructure that’s almost entirely invisible to the public. Can a researcher quickly find out how many eligible patients exist before committing to a study? Is the necessary data available? Where could a trial be conducted? 

We’re investing in the plumbing – expanding data availability for feasibility assessments and developing tools that will help researchers check that trial data is ready to use. 

Compute and AI: early steps, not big bets 

The UK has built genuinely world-class computing power and health data research has barely touched it. We are now exploring how secure data environments could use that power without weakening the safeguards that make them secure in the first place. 

On AI specifically, we’ve made small initial investments rather than big bets, for example a project that will effectively evaluate how clinical AI tools perform once they are deployed – ensuring that AI tools remain safe and effective in practice.   

What we’re asking of funded projects  

We’re asking three things of every project we have invested in: share what you learn; produce things other teams can reuse, not just outputs that only work locally; and, where it makes sense, set out a roadmap for wider deployment. Supporting one team to solve a problem is only worth it if everyone else can use the answer. 

We’re also bringing teams together across the network, so that projects working on related problems can talk to each other directly, rather than reporting separately back to HDRS. Real coordination across the UK won’t come from funding decisions alone. In line with our commitment to transparency, we will report publicly on the outcomes of these projects on our website. 

The full list of funded Technical Transformation Projects is published alongside this post here