Big data and cancer – our greatest obstacles present a real opportunity

These activities brought together a diverse range of self-selected stakeholders, including healthcare professionals, clinical research scientists, patients, and epidemiologists. The findings highlighted recurring challenges in cancer research, such as governance issues, and legal and ethical barriers, each of which hamper the timeliness and availability of valuable datasets to researchers. Furthermore, the community voiced concerns over data quality, including poor curation, a lack of standardisation across systems and inadequate metadata.

Whilst big data holds wide-reaching potential for cancer research, the challenges associated with data sharing and knowledge exchange mean that this opportunity remains untapped. The real-world data survey found that only 21% of respondents considered the data (easily) accessible – a finding that was mirrored in the subsequent sample and data reuse survey. Additionally, only around one-third of respondents were based at centres with established processes for access to real-world data for research.

The value of real-world data was heavily supported, with over 90% of survey respondents supporting its ability to inform clinical decision-making, but also the potential to provide evidence that cannot be provided by clinical trials. Stakeholders demonstrated an interest in using a range of data types, including patient records, biological samples, genomic data, and pathological data for their research.

However, a quarter of survey respondents deemed the quality of these datasets is often too poor to be useful. This concern was further supported in discussions at the workshop, coupled with an uncertainty as to whether quality control measures were in place at participant’s institutes.

A clear demonstration…

Another strong theme to emerge from these activities is the need for funding of infrastructure and training. Aside from disseminating knowledge around access to existing resources, ensuring that datasets are better curated with wider training about data standards and/or funding for retrospective data harmonisation, would drastically enhance the portability and interoperability of the data.

The Demonstration Project Award call, launched by CRUK in autumn 2024, was open to the special interest group leads to encourage cross-interest group collaboration. Leads had the opportunity to apply for collaborative awards of up to £250,000 for a duration of 18 months. Following peer review, four projects were awarded funding, with CRUK providing nearly £590,000 in support. Kicking off in April 2025, the funded demonstration projects focus on key areas such as data standardisation, data diversity, patient engagement in children and young people’s (CYP) cancer research and improving findability and accessibility of CRUK-funded datasets.

Awardees will be invited to provide an update at the 2026 CRUK data-driven cancer research conference. These Demonstration award-funded projects aim to begin addressing challenges affecting the entire cancer research community and prove, with appropriate investment and infrastructure, that these obstacles can be overcome.