Exploring good health through data with Somali women

When I founded Health in the Margins CIC, I wanted to take a different approach to improving health. After more than 10 years working in global public health, I had seen how decisions about health are often made for communities rather than with them. Too often, the people most affected by health inequalities are invited into conversations only after priorities have already been set. That is why community voices sit at the heart of everything we do. 

When we saw the opportunity to apply for the Health Data Research UK (HDR UK) Take the Lead grant, it felt like a natural fit. Through longstanding personal connections and previous health-related work alongside Somali communities internationally, we wanted to continue building relationships with Somali women in London. 

As our first successful grant, Take the Lead was also an important milestone for our organisation. As a small, newly established community interest company, the support and guidance from the HDR UK team helped us turn our ideas into activities. 

Creating space for conversation 

Our project brought together Somali women living in Newham for four community dialogue sessions in 2026. Across the sessions, we recorded 72 attendances, with many women choosing to return for more than one session.  

Instead of asking participants to complete surveys or delivering one-way health messages, we used existing data as a starting point for discussion. Together, we explored what the available evidence said about health in the Somali community, where it reflected lived experiences, where it fell short and what this meant for future action.  

We gathered publicly available data about health in the Somali community discussing topics including long-term health conditions, mental health, sexual reproductive health, infectious diseases and maternal and child health. Participants also shared community health practices, cultural knowledge around health, and their experiences of accessing healthcare in the UK. 

The discussions have since been brought together in an advocacy pack to help shape future work alongside the community.  

What did we learn about health data – and what surprised us? 

One of our biggest reflections is that routine health data tells only part of the story. 

People experiencing the greatest health inequalities are also those least represented in official datasets because they face barriers accessing healthcare. If we rely only on routine health data, we risk overlooking the experiences of those who most need to be heard. Community conversations help fill those gaps, by providing context explaining why patterns exist and highlighting priorities that statistics alone cannot capture. 

Perhaps most importantly, the project reinforced that communities often define health priorities differently from healthcare systems. Listening first allows researchers and public health professionals to better understand what really matters to the people they hope to support and to recognise the valuable knowledge and expertise that community members themselves bring.

What surprised us most wasn’t the topics people raised, it was how much people wanted to talk. Many sessions ran over time because participants valued having a space where they felt genuinely heard. The conversations were rich, thoughtful and deeply personal. As one participant told us:  

“We felt that our voice was heard, and our health issues and concerns were taken into consideration.” 

The conversations also revealed rich traditional health knowledge and community practices that have supported wellbeing for generations, alongside reflections on how migration and adapting to life in the UK had changed these practices.  

Finally, we found ourselves challenging a common assumption. The Somali community is often described as “hard to reach”. Our experience was different. When engagement is built on trust, respect and existing relationships, communities are not hard to reach, they are keen to join in because they know their participation matters. 

Why apply for Take the Lead? 

For community organisations thinking about applying to Take the Lead, we would absolutely encourage you to do it. The Take the Lead grant was a wonderful experience from start to finish. The application process was manageable for a small organisation, and the HDR UK team were approachable and supportive throughout. Their involvement, including attending one of our final sessions, made the project feel like a genuine partnership rather than simply a funded project. 

Our biggest takeaway is this: involve communities in setting the agenda, not just delivering it. Communities should be partners in shaping research questions, interpreting findings and deciding what happens next. When communities lead the conversation from the beginning, the insights are richer, the relationships are stronger and the work is far more likely to lead to meaningful change. 

 Find out more about HDR UK’s Take the Lead grant opportunity.