Data Diversity Theme Volunteer: Help Make Health Data Work for Everyone

Want to get involved in practical work on data diversity and health equity, alongside a friendly global community?

The DSxHE Data Diversity Theme focuses on a simple problem with big consequences: many biomedical datasets don’t represent the people most affected by disease. When data is skewed, research findings may not generalise well, and tools like risk scores and predictive models can perform worse for underrepresented groups. That gap doesn’t just “happen”. It reflects deeper structural inequities in how research is designed, funded, and governed.

This DSxHE project, supported by Cancer Research UK and shaped by community conversations, is designed to change that. We’re co-developing inclusive data collection protocols, equity-focused training materials, and governance frameworks that help embed data diversity into cancer research. We’ll do this collaboratively, bringing together researchers, data scientists, clinicians, patient advocates, and policymakers, with community engagement built in from early landscape mapping through to validation workshops.

How you can get involved

You don’t need to be a specialist. If you care about fairness in research and like working with others, there’s a place for you.

You could support:

• Planning and hosting virtual sessions

• Mapping and researching the resources that already exists

• Helping shape accessible training materials and practical checklists

• Supporting community-led governance and accountability approaches

Hands-on tasks might include:

• Sharing articles, examples, or tools in Slack

• Writing short summaries, blogs, or event recaps

• Inviting speakers, panellists, or community contributors

• Helping with comms: posts, messages, and engagement

• Keeping shared documents organised and up to date

Nothing is set in stone. You can shape your volunteering around your interests, your learning goals, and the time you have. An hour occasionally is helpful. A regular slot is helpful too. Either way, your contribution matters.

This could be a good fit if you:

• Care about data diversity, health equity, and fair research practice

• Enjoy collaborating with people across disciplines and lived experience

• Want to learn, contribute, and be part of a supportive community

What you’ll gain

• A chance to collaborate with people working across research, practice, advocacy, and policy

• A friendly platform to share ideas and build connections in the health equity space

• Experience in community-led research, comms, event planning, and resource building

• The satisfaction of helping make data-driven research more inclusive and accountable

Interested? Email info@datascienceforhealthequity.com