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DSxHE Data Diversity Theme: what’s happened so far (and what’s coming next)


If you’ve ever looked at a dataset and wondered, “Who’s missing?” you already understand why the DSxHE Data Diversity Theme exists.


This is an 18-month partnership between Data Science for Health Equity (DSxHE) and Cancer Research UK (CRUK), focused on helping the health research ecosystem make progress on diversity in data, research design, and reporting.


Why this matters

When datasets are not representative, research can be less accurate, less useful, and less fair.

Two stats that really bring this home:

  • Over 80% of participants in genomic studies are of European genetic ancestry, even though that is not reflective of the global population.

  • 40% of NIHR-funded clinical trials (2007–2017) did not report participant ethnicity.


We’re also seeing more funders asking research teams to show meaningful work on diversity and inclusion. That means there’s a growing need for practical guidance and usable tools, not just good intentions.


What we’re here to do

The Theme is working towards three connected goals:

  1. Education and training to build confidence and capability

  2. Tools and resources to support inclusive research design

  3. Practical evidence through pilots and proof-of-concept work


And because DSxHE is community-led, we’re doing this by listening first, then building solutions with the people closest to the work.


This work is phased so we can build these useful resources sustainably:

  • Phase 1: map needs and the landscape (this is where we are now!)

  • Phase 2: co-design solutions

  • Phase 3: validate and refine these solutions and share them widely


What we’ve done so far

Here’s the quick highlight reel:

  • Built the team and the plan: since September 2025, we’ve recruited an ace cross-sector team through DSxHE networks and hosted early community drop-ins with researchers to get a sense of what’s really needed.

  • Hosted a public launch: featuring Prof Shaun Treweek on inclusive clinical trial design, with CRUK and a patient representative. We had 50+ attendees, plus follow-up interest from lots of organisations who are also working hard to help make research more inclusive (shout out to HDR UK, Research Data Scotland, PEDRI, and the MESSAGE project, amongst others!).

  • Ran a survey (because we love evidence): we designed a survey with researchers across disciplines and universities to understand barriers and enablers to inclusive, data-driven health research. It received over 50 responses from researchers across a wonderfully diverse range of backgrounds. Keep your eyes peeled for our report summarising these results, coming very soon!

  • Started building a PPIE panel: we’re establishing a diverse Patient and Public Involvement and Engagement panel, with 40+ expressions of interest so far. The PPIE panel will be playing a key role going forward to co-design the Theme’s activities, and support the wider DSxHE community more generally.


What’s coming next

Next up, we move from mapping to making...


Community exchange events (from March/April 2026)

From March/April 2026, we plan to run 8–10 online events co-hosted with external partners. HDR UK and PEDRI are confirmed as initial collaborators.


These sessions will share what already exists, spotlight best practice, identify gaps, and create clear contribution pathways for volunteers to help develop resources alongside the PPIE panel.


Statistical methods tutorial series

Our survey flagged statistical methods and software as a priority, so we’re planning a tutorial-style series with the DSxHE Statistical Methods Theme. These sessions will be practical, feedback-driven, and designed to help methods developers understand what people need to adopt inclusive approaches in real settings.


Want to get involved?

There are lots of ways to get involved, whether you have loads of time or just a little to spare.


Volunteer

If you’d like to help shape the next stage, we’d love to have you on board.


Slack

Join the conversation, share resources and tools, and stay in the loop via Slack. The #theme-data-diversity channel is where we’ll be sharing data diversity related updates.


Newsletter

Get updates in your inbox by joining the DSxHE monthly newsletter, the Data Diversity Theme mailing list, or both!



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