Today’s datasets tend not to be representative: for example, over 80% of participants of genomic studies are of European genetic ancestry despite these groups representing less than 16% of the global population. This lack of representativeness can limit the generalisability of research findings and can reduce the effectiveness of predictive tools and interventions for underrepresented groups.  

This new project, emerging directly from community conversations within DSxHE and supported by Cancer Research UK, aims to confront that issue head-on. By co-developing inclusive data collection protocols, equity-focused training materials, and governance frameworks, the project seeks to embed data diversity into the fabric of cancer research. Rooted in DSxHE’s participatory ethos, the initiative will bring together researchers, data scientists, clinicians, patient advocates, and policymakers to co-design solutions that are not only practical but grounded in lived experience. Community engagement is built into every phase - from crowdsourced landscape mapping to validation workshops - ensuring outputs reflect the real-world challenges faced by those working to advance health equity.

This is more than a technical fix. It’s a systemic intervention designed to shift culture, practice, and policy across the research ecosystem. Through this work, we aim to bridge the gap between aspiration and implementation - supporting a future where the benefits of data-driven science are truly inclusive. If this sounds like something you’d like to get involved with, we’d love to have you on board. 

Please get in touch at b.lehmann@ucl.ac.uk.