Connecting the holy trinity: life science sector, academia and NHS data

Last week, Health Data Research UK (HDR UK) organised an industry workshop, with support from the BIA, to discuss the implementation of the Digital Innovation Hubs. The Hubs were first recommended in the Life Sciences Industrial Strategy and last week’s event marked a (small) step forward in making them a reality. 

The workshop had around 80 attendees from biotech, pharma and medtech companies. 

The three to five Hubs will be established in regions across the UK to connect health-related data of populations of around 3-5 million people. This data will be situated within a single interoperable, trusted, and secure governance framework, allowing researchers and scientists to safely and securely use the data to develop new scientific knowledge and emerging technologies.

The Hubs will increase the strength of the UK’s world-class life sciences ecosystem – from supporting the development of future treatments and increasing our understanding of disease, to boost health services and improve the way we can prevent, detect, and diagnose diseases such as heart disease, cancer, and asthma.

While the UK has some of the richest health data of anywhere in the world, these datasets are fragmented across health, care, genomics, and biomedicine. This makes it difficult, and sometimes impossible, to access and use the data in research. As a result, research can be delayed and halted.

The recommendation of the establishment of the Hubs received government backing through the multimillion Industrial Strategy Challenge Fund last December in the Life Sciences Sector Deal. HDR UK is leading on this exciting project and last week’s workshop was one of a series of engagement events that will help define the Hubs. Over the longer-term, the ambition is to expand the programme towards full UK population coverage.

At last week’s industry workshop, David Atkins, CEO of BIA member Congenica, spoke about the company’s partnership with Genomics England and how they use health data to diagnose rare diseases. We also heard from Lord O’Shaughnessy, the Health Minister responsible for the life sciences and NHS innovation. He emphasised that the strength of the UK’s life science sector and our world-class universities, together with our NHS data, make the UK a unique place to utilise health data in a secure manner.

David Atkins, CEO of BIA member Congenica, presenting on the importance of health data in innovation.

This holy trinity – a globally competitive life sciences sector, world-class academia, and unique NHS data – has the potential to dramatically increase the UK’s life science offer. But connecting the trinity is not going to be easy and many challenges remain to be solved, ranging from the governance framework and viable commercial models, to perhaps the most important one of them all – the public perception of the use of health data in research.

While most people support sharing patient data for individual care and a high proportion of people support sharing patient data for research where there is public benefit, transparency is key for this support. We look forward to continuing to work with HDR UK and other collaborators on this important issue and the implementation of the Hubs more broadly.