CEO Update

October has been another productive and fast-paced month for HDRS as we continue to mobilise as an organisation.  

Most significantly, on 9 October, the Prime Minister announced that dementia will be one of HDRS’ first priorities. Nearly one million people in the UK live with the condition, and around one in two of us will be affected by it in our lifetime. Behind those figures are patients and families who need better answers, earlier diagnoses and more effective treatments. 

This is exactly why HDRS exists: to turn the extraordinary potential of the UK’s health data into discoveries, treatments and better outcomes for the people who need them. 

Dementia gives us an early opportunity to demonstrate what faster, more secure access to data can make possible. The announcement came alongside new government investment in The BARBARA Alliance, which will help more people participate in clinical trials. HDRS will complement that work by helping researchers design better studies, work with data at UK scale and unlock discoveries that would be difficult or impossible using smaller, fragmented datasets. 

This month also saw the second assessment cycle for our Data Driver projects, which has brought forward another strong and ambitious set of applications and made the selection process exceptionally difficult. These projects matter because they allow us to deliver impact now, while learning what researchers and data providers need from HDRS as we build the service. Thank you to everyone who submitted an application. We can’t wait to share more about the selected projects next month. 

Partnership is fundamental to delivering our ambition and once again I have been listening, testing and developing our emerging model and vision with partners across all four nations. Our Four Nations Council met this month to discuss our emerging strategy, service model and opportunities for data-enabled clinical trials. I was also delighted to join senior leaders at the House of Lords to explore the potential of sovereign AI for the NHS, and contribute to the Health and Social Care Committee’s stakeholder event on Digital Innovation in the NHS. In Wales, I joined health data experts from across the UK to explore how routine health and care data can drive research impact. I also had the privilege of delivering the Schorstein Lecture at William Harvey Day at Queen Mary University of London, exploring The Next Era of Health Research: Unlocking the Power of Data and the opportunities to transform research through data. 

As we move into the next phase of mobilisation, I’m looking forward to engaging on our emerging HDRS vision across the research ecosystem through a series of UK-wide roadshows and roundtables in the coming months. By working with patients and the public, industry, charities, academia and data providers, we can continue to shape our direction together, identify opportunities for collaboration and ensure the service we build reflects the needs of those who will use and benefit from it. 

At HDRS, we talk about patients as our North Star. That principle needs to shape not just what we build, but how we build it. To put that principle into practice, we are recruiting two new Patient and Public Involvement and Engagement (PPIE) roles to our expanding HDRS team. We are also looking for a Director of Portfolio and Performance to help turn our ambition into delivery, with further roles planned imminently.  

You can find all our current vacancies on our website. You can also read what it’s like to be part of the HDRS team in a new interview with Chris Schonewald, our Chief Operating Officer, the first in a series introducing our growing executive team. 

Our direction is clear: faster approved access to health data, more discoveries and, ultimately, better health. October has brought that ambition another important step closer to reality. 

Dr Melanie Ivarsson 
Chief Executive