The UK’s cancer data opportunity: a new perspective from the CRUK Data Science Community

Colin McLean, Senior Data Scientist for the Data theme of the CRUK Scotland Centre, is among the authors of a new perspective piece in the European Journal of Cancer. “From bench to byte: A UK perspective on data-driven cancer research” was written by the leads of Cancer Research UK’s Data Interest Groups and sets out the shared obstacles they meet, along with the responses already taking shape.

Its premise is that the main difficulty in oncology has shifted. Generating data is no longer the problem. Routine care, imaging, genomic sequencing and patient-reported outcomes already produce it in volume. The harder task is linking these sources, governing them in proportion to their sensitivity, and turning them into evidence that changes practice. Real-world data now sits alongside trials, giving a wider view of how treatments perform across more representative patient groups.

CRUK invests over £400 million in research each year and has published a data strategy built on eight elements, from public trust to workforce and sustainability. To act on it, the charity formed a Data Science Community organised into five Data Interest Groups. Many of the questions they face are also live across Europe as the European Health Data Space prepares for implementation.

The authors work through the obstacles group by group. UK health data is divided across four nations, regional hubs and individual institutes, each with its own definitions and systems, which makes linkage hard even when its value is clear. Reuse is held back by thin metadata and inconsistent access, prompting work on the CRUK Data Hub with HDR-UK and on the OMOP common data model. Representation remains uneven, with <u>more than 80% of people in genomic studies of European genetic ancestry</u> and 40% of NIHR-funded trials over a decade recording no ethnicity data at all.

Colin leads the group on training and careers, the theme with the most direct bearing on Edinburgh. Data scientists are in demand and difficult to keep in academic research. Support for interdisciplinary staff is often thin, a defined route from early-career post to principal investigator is usually missing, and many move to industry. The article points to workable responses, including consultancy models that give data scientists permanent contracts, adopted by several universities including Edinburgh, as well as joint funding applications and schemes such as the Turing PhD enrichment programme.

The piece also gathers case studies showing what connected data already delivers, from multi-omic work on cancer initiation to the OPTIMAM breast screening image database and international collaboration on rare childhood leukaemias. The argument throughout is that technical capability alone will not be enough. Trustworthy governance, interoperable standards, durable infrastructure, genuine public involvement and a supported workforce have to advance together.

Read the paper: Wooller SK, Blake A, McCabe M, McLean C, Price G, Unsworth H, Van Hemelrijck M, Pearl FMG. From bench to byte: a UK perspective on data-driven cancer research. European Journal of Cancer 2026;240:116751. https://doi.org/10.1016/j.ejca.2026.116751

The UK’s cancer data opportunity: a new perspective from the CRUK Data Science Community

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