Diagnosis – building the puzzle at its edges

Catching a tumour in the early stages can make a big difference in the health outcomes of those affected by cancer. But we know that the barriers to this for many marginalised groups can mean tumours aren’t caught early enough. Much like starting a puzzle with the edges, it can be helpful to piece together some of the more visible parts of the problem to allow us to get to the root of it.

Dr Cristina Renzi and her team at University College London are doing just that — taking a look at people with a long-term condition, with the hope of uncovering some of these barriers to early cancer diagnosis.

This is not only a UK problem. A recent international study highlights individuals with mental health conditions are more often diagnosed with cancer following an emergency presentation, rather than through routine screening, with worse survival. But Cristina and her team not only want to understand what is happening, but how we can intervene. “To develop targeted interventions,” she explains, “we aim to provide detailed population-based evidence, identifying where delays occur along diagnostic pathways and identify higher risk groups among people with different disability types and cancer symptoms.”

And to help evaluate the inclusiveness of screening and diagnostic centres, the team has partnered with architects from the Design and Health Lab at the Politecnico University of Milan – a World Health Organisation Centre for Design & Health. The lab’s ‘Design for All’ tool combines qualitative and quantitative criteria to evaluate healthcare spaces to offer a comprehensive view of how physical, sensory, cognitive and social barriers could affect its usage. Collaborations like this are so important in helping us to move towards a more equitable future. Thoughtful design which creates infrastructure that responds to the full spectrum of human experience shows more than just compliance, but a move towards genuine inclusivity.

Treatment – when the pieces don’t fit

Recent International Cancer Benchmarking Partnership publications^{1, 2} showed the UK to be behind many other countries when it comes to timely cancer treatment. Dr Robert Kerrison from the University of Surrey, is hoping to get a handle on this issue of treatment delay and investigate whether this could be a symptom of treatment inequity.

He and his team will embark on a series of studies starting with an immense analysis project using both primary and secondary-care data to get an understanding of demographic differences in how long people are waiting for treatment.

It’s a shift from numbers to nuance, aiming to understand not just what’s happening, but how it feels to those affected. The third and final study will take this even further, conducting in-depth interviews with patients to get under the skin of the issue and uncover the underlying mechanisms driving disparities in treatment timelines.

And at every step of the way they’re keeping the patients in mind. “We need to advocate with them and not for them” Rob says. The latter half of this work relies heavily on empowering the people whose voices can often go overlooked in research to take part. And Rob’s involvement in previous work has given him a strong foundation to consider diversity when gathering a cohort, having previously worked with a multi-lingual trial recruitment company to recruit and interview patients whose first language is not English.

Rob’s work is a reminder that equality in cancer care isn’t just about access, it’s about experience, agency and trust. By combining data-driven insight with patient-led perspectives, his team is helping to understand and reshape a system that too often leaves people behind.

Piecing together the whole picture

For Dr Melissa Davis, solving cancer inequality isn’t just about filling gaps in data – it’s about rethinking what data matters. As the lead of the Cancer Grand Challenges team SAMBAI, she is spearheading a global effort to build the most comprehensive picture yet of how biology, environment, and lived experience intersect to shape cancer outcomes, particularly for people of African descent.

“We’ve had incredible genomic datasets and rich social data, but never both for the same people,” she explains. SAMBAI’s ambitious 40,000-person cohort spans the US and the UK, as well as Ghana, Nigeria, Kenya, Zambia and Ethiopia. The study layers genomics, exposomics and social determinants of health to uncover the mechanisms behind persistent disparities. “We’re finally going to be able to ask: is it the gene, the geography, or the lived experience?”

And it’s understanding risk factors like this that are so important to build up the context for Melissa’s research. Earlier this year, for example, there was significant chatter online amongst black women after a Consumer Reports study found carcinogens in popular brands of synthetic braiding hair. ”Have you taken a health questionnaire and been asked how often you braid your hair and the type of extension you use?” Maybe that’s a question that needs to be asked and we’d be able to see that with exposomics,” says Melissa.

Ultimately, Melissa wants to see a shift in how we define precision medicine. “Precision means being precise about who the patient is,” she says. “Not just their genes, but their story.” SAMBAI isn’t just building a dataset – it’s building a new framework for cancer research, one that sees patients as whole people and inequity as a solvable puzzle.

Finding the final pieces

Cancer inequality is complex, but not unknowable. As researchers continue to focus on the issue, gather richer data, and centre the voices of those most affected, the picture becomes clearer. Whether it’s through rethinking diagnostics, redesigning treatment pathways, or redefining what counts as evidence, the work being done today is laying the foundation for a future where cancer care is truly equitable – for everyone.