Unlocking data to accelerate medical discoveries

Professor Hargrave, a medical oncologist specialising in brain and central nervous system tumours at Great Ormond Street Hospital and Clinical Professor at University College in London, was a plenary speaker at the 2023 Children’s Brain Cancer Conference in Brisbane, where he attended an FCD workshop hosted by Minderoo Foundation.

Q: What are the roadblocks to unlocking global research and clinical data and why is it so important to overcome them?

A: Thankfully paediatric cancers are rare, but they remain the leading cause of disease-related deaths in children. With the advent of routine and research molecular profiling of paediatric cancers, there is an accumulating amount of precious, complex data that links genomics, clinical and potentially imaging information. However, this is locked up and siloed in numerous institutional databases, where small numbers mean its potential is yet to be realised. Finding a way to unlock and link these accumulating data sources could provide a huge opportunity to unleash the power of “Big Data” analysis to direct and fund better and kinder treatments for childhood cancer.

Q: The federated approach in which data stay at their original location and are analysed remotely, without data copying or transfer – why is this internationally recognised as the only real solution for connecting datasets across the world?

A: One of the reasons we have not made progress in combining datasets so far is the complexity from technical, resource, ethical and regulatory aspects in moving data around and across differing institutional and national boundaries. A federated data approach bypasses much of this complexity by allowing remote data analysis of virtually combined data which remains within its original location across the globe by using a common data platform. This is truly an innovative way to solve this major barrier to better collaboration.

Q: You are leading the international paediatric high-grade glioma pathfinder project with Minderoo Foundation – who is participating and what are the aims?

A: The paediatric high-grade glioma (pHGG) pathfinder project is funded by Minderoo Foundation and is piloting a federated data approach across three continents. This links Great Ormond Street Hospital in the UK, where I work, with national research networks in Australia (effort led by Geoff McCowage) and the US (effort led by Angela Waanders), with the aim of forming a federated cancer dataset for rare and difficult-to-treat childhood cancers. We hope this pilot will illustrate how to overcome challenges in establishing a federated dataset and provide learnings that can be applied more widely. In addition, we hope to data-mine the pHGG data to increase our knowledge and provide a resource for researchers that would not be available without such a collaboration.

Q: How do patients and families stand to benefit from the outcomes of this pathfinder project?

A: My experience as both a doctor and a clinical researcher is that patients and their families desperately wish to help find better future treatments through the sharing of data. The pHGG pathfinder project will allow this to be done in a data-safe and more efficient way, by overcoming barriers encountered by conventional data distribution models to unlock the potential of global collaboration to accelerate research.

Q: What are your hopes for the future when it comes to harnessing the power of patient data?

A: I hope we can demonstrate the power of a federated data solution as a means of linking multiple global data sources, providing an amazing, untapped potential resource of real-world and research patient data to drive forward cancer treatment.