CEO update

It is a year since the government published the Life Sciences Sector Plan, with the bold ambition of making the UK Europe’s life sciences leader by 2030. The creation of the Health Data Research Service was a central pillar of that plan. I was appointed as chief executive in January, and as of 26th June, HDRS is now formally established as a government-owned company

We are here to enable better research and better healthcare – for patients, for researchers, for everyone. Since my appointment in January, I have spoken to over 250 people – patients, researchers, academics, life sciences companies – and they all express the same frustrations. 

UK patients are missing out on medical innovations that could be life-changing, because we do not currently have in place an integrated service that enables health data access for research. Health data is fragmented, held in multiple places, and accessing it is complex and time-consuming. It can literally take years for scientists and researchers to get hold of data that could be life-changing for thousands of people. 

This matters. Imagine being able to catch cancers earlier because amalgamated data highlighted a trend in certain populations.  Imagine being better able to manage a child’s asthma because we know more about pollution patterns and how they affect respiratory problems. Imagine the potential medical breakthroughs we could achieve by bringing together hundreds of small data sets on people with rare diseases, including their biological make up, lifestyles and how they respond to different treatments. 

All of these are theoretical examples of what we can achieve in the UK if researchers can access health data safely and easily.  Our next step is to agree what “driver projects” we will fund over the next year or so – we will be looking to work with partners to support initiatives which we think can have the greatest impact, while helping to inform the build of HDRS

Effective clinical trials are critical to medical innovation. We will make them more accessible and deliverable, simplifying and speeding up the process so that breakthroughs in patient care are achieved more quickly and frequently. 

In all of this, patients are our North Star. I have spent time listening to patients on what research has meant for them and their families, and the importance of the health data that underpins it all. This is why HDRS is being developed with and for patients,  ensuring they are involved in decision making on an ongoing basis.  We want the public we are here to serve to continue to shape decision-making and to build trust and understanding about how health data is used, its safeguards and its impact. 

It’s important to recognise that trust has to be earned and is fragile. To achieve what we know is possible, we need to earn the trust and confidence of the public. Ultimately, researchers, scientists, academics and the public all want the same thing: saving and changing lives through medical discovery.  But getting there is a journey we have to make together. 

Dr Melanie Ivarsson
Chief Executive