From Data Gaps to Data Diversity: what we heard at the Data-Driven Cancer Research Conference

Last month at Cancer Research UK’s Data-Driven Cancer Research Conference in Edinburgh, the DSxHE Data Diversity Theme led two engaging roundtables on From Data Gaps to Data Diversity in Cancer Research. Facilitated by Toral Gathani, Charlotte Misseldine and Mathew Tata, the roundtables brought together a wide range perspectives from across the cancer research ecosystem.

Working across the different stages of the research lifecycle, groups explored what inclusive research looks like, the main barriers, and what would help move it forward.

Here are a few highlights from those conversations…

What inclusive research looks like across the lifecycle

Idea Generation

Participants emphasised that:

Inclusive research begins with who helps to shape the question.

That means co-producing research questions with public groups, including people with lived experience, and bringing a range of voices into that discussion. Groups also stressed defining terms like “deprivation” early, alongside clear inclusion measures that are used throughout the project, not just named at the start.

Development

Here, participants focused on engagement and the practicalities of working with data.

Inclusion can be hard to deliver without time, funding, and accessible routes to involvement.

Recruiting people from deprived areas, including those who do not speak English as a first language, was seen as a major challenge. Discussions noted the importance of being clear about the impact contributors’ input will have. They also raised barriers around funding, data access and storage, incomplete records, and non-standardised variables.

Research design and analysis

For this stage, participants highlighted data linkage challenges given scattered sources, and the difficulty of identifying what the optimal risk factors to study may be.

Design choices are constrained by what data exists, and how well it can be linked.

Mixed methods and understanding patient experience were discussed as ways to contextualise quantitative statistical results. They also raised questions about comparison groups, model inclusion, small sample sizes, and whether datasets reflect the wider population. Participants also noted that the timing of consent matters, as people may be under too much stress at some points in their care to give informed consent.

Dissemination

Dissemination was very much viewed as central to inclusive research rather than an afterthought.

Who hears the findings, and how, matters.

Participants talked about broadening stakeholders beyond the research community to include policymakers and decision makers, and working with local NHS boards. They also highlighted how difficult it can be to reach certain communities taking into account potential language barriers and community feelings of mistrust. Co-produced outputs with patients, communities, and trusted leaders were seen as more credible and more likely to reflect community priorities. Other important factors were the use of audience-appropriate language, multilingual written information, and accessible communication channels.

Recurring challenges

While some stages of the lifecycle revealed their own specific challenges, other barriers came up repeatedly: unclear definitions, missing or inconsistent diversity data, limited access to granular datasets, and the time needed to build inclusion into research from the start.

Moving forward: how to improve inclusivity

Participants shared a range of great, practical ideas to improve inclusivity across the research lifecycle. These included:

• involving communities earlier in shaping research questions

• designing around geographical blind spots

• using trusted local routes such as GP clinics for outreach

• improving access to more granular linked data

• engaging early and often with people with lived experience

• building in measures of representativeness

• working with trusted community contacts

• using clear lay communication when sharing findings.

What’s next

We’ll use these reflections to feed directly into our ongoing DSxHE Data Diversity Theme project - if you want to get involved please contact us via email info@datascienceforhealthequity.com or join us in the DSxHE Slack Workspace #theme-data-diversity.

Thank you to everyone who took part in these discussions at CRUK’s conference. We’re grateful for the time, openness and practical insight people shared, and we’ll carry these reflections forward as our work continues. 💖

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About the Data Diversity Theme

Health datasets often don’t reflect the diversity of the populations they aim to serve. This lack of representativeness can limit the generalisability of research, reduce the effectiveness of new tools, and risk widening health inequalities.

A partnership between Data Science for Health Equity and Cancer Research UK, the Data Diversity Theme brings together researchers, clinicians, funders, and patient advocates to co-create practical ways of embedding diversity across the research lifecycle. It is co-led by Dr Toral Gathani (University of Oxford) and Dr Brieuc Lehmann (UCL).