Beyond Representation: What I Took Away from Our Future Health
Updated: 2 days ago
by Peter Oluwatimilehin, DSxHE Volunteer
I knew about Our Future Health from afar, but attending the DSxHE event, Beyond Representation: Building and Using Health Data for Everyone, gave me a much better appreciation of the amount of work going on behind the scenes, particularly around improving representation in health research.
The organization is working towards recruiting five million participants, and what I found particularly interesting was the effort being made to ensure that those participants adequately represent the population. Because what is the point of having a very large dataset if certain communities are consistently underrepresented and disadvantaged?
Improving representation goes beyond inviting more people
What caught my attention was the range of approaches being used to improve participation. From community engagement in Manchester to reimbursement, university mobile clinics, and walk-in appointments, there is a multitude of interventions being explored. I particularly liked the walk-in clinics. The idea of going to where people are, rather than always expecting people to come to you, is quite interesting. It removes some of the barriers associated with booking appointments, traveling, and finding time to participate.
What made these interventions even more interesting was the work that went into implementing and evaluating them. Dr Kirstin Purves' presentation on evaluating and iterating recruitment approaches demonstrated how the Experimentation & Insights team uses different research methods, from surveys and smaller pilot studies to randomized controlled trials, to evaluate their effectiveness. The community engagement work in Manchester was one example. By working with local communities, businesses, and community leaders before inviting people to participate, they were able to examine whether those relationships made a difference to recruitment. The findings suggested that they did.
Another interesting aspect was the use of statistical methods to understand representation. Weighting, for example, is useful for correcting imperfect representation in research, but it also provides valuable information about how well recruitment strategies are performing. It can help identify which groups remain underrepresented, where additional attention is needed, and whether particular interventions are making a difference. The comparison between walk-in clinics, university mobile clinics, and other recruitment routes was particularly interesting because it showed that even when certain approaches are more expensive, they can provide substantial statistical value by improving representation.
For me, this reinforced the importance of implementing interventions, evaluating their effectiveness, and continuously improving them based on the evidence.
A question that challenged my thinking
During the breakout discussion, I raised a question about participant reimbursement. The presentation had shown that reimbursement could improve participation, with an expected 24% relative increase in full participation when it was offered. However, I was initially a bit surprised by the idea. Even if reimbursement is effective, does this kind of incentive have a proper place in health equity research? How do we ensure that participation does not become transactional or create the impression that researchers are buying data? I felt it could become a slippery slope if not handled carefully.
Dr Kirstin Purves provided a fair clarification. The purpose of reimbursement was also to address practical barriers, such as travel expenses, that might otherwise prevent someone from participating. The team had conducted quantitative research and interviews to understand people's views and determine an appropriate reimbursement amount, eventually arriving at £10.
This brought me back to what equity actually means. Equity is about understanding people's circumstances and providing the support they genuinely need so that those circumstances do not automatically put them at a disadvantage. I still think there is an important balance to maintain, but I appreciated the explanation.
What was particularly reassuring was realizing that the concerns I raised were already familiar to the team. They had given considerable thought to them and developed approaches to address the potential challenges. Sometimes, it is simply reassuring to know that the people responsible have already considered the issues you are raising. For me, that showed the level of dedication they have to their work, and it gave me greater confidence in their approach.
Participation, relationships, and trust
Another interesting point from the breakout discussion was the importance of communicating expectations clearly. Kelly Tunley raised the issue of people becoming discouraged from participating because they might feel unable to commit to an entire research activity. However, even participating once can make a difference, particularly when engaging communities that are often underrepresented.
There was also a discussion about sustainability, relationship building, and being mindful of the expectations we create when involving people in research. Mel Ramasawmy's contribution raised the importance of maintaining those relationships, while Rachel emphasized the need to include voices that are often missing so that research can better reflect the diversity of the population the NHS serves.
These conversations reinforced the importance of trust. Towards the end of the presentation, three areas of focus were highlighted: access, relevance, and trust. I think these bring together much of what was discussed. People must be able to participate, understand the relevance of the research to them, and trust the people and organizations conducting it. Addressing these areas together can help create a more inclusive research environment.
Something else the event made me think about
Having recently completed my master's degree, I am still very interested in research. I enjoy exploring ideas, asking questions, and seeing what I can discover. However, I also find myself wondering about the opportunities available to people who want to continue conducting research independently, without necessarily pursuing a PhD or being affiliated with a research institution. Sometimes, people simply want to do research because they enjoy it.
Seeing the amount of work Our Future Health has put into evaluating and iterating its recruitment approaches made me think about whether similar efforts could also help address barriers faced by independent researchers. They have explored different interventions, evaluated their effectiveness, and continued improving them to make research participation more inclusive.
So, could we also explore approaches that make it easier for independent researchers with the necessary skills to contribute, while maintaining appropriate safeguards?
I understand that accessing health data comes with responsibilities, including data protection, ethics, and information governance. But I think there is an interesting conversation to be had about supporting researchers who have the skills and genuine interest to contribute but may lack the institutional affiliations that are often required.
Because if we are talking about making research more inclusive, perhaps we should also think about the opportunities available to those who want to conduct the research, not just those who participate in it.
Final thoughts
I left the event with a lot of appreciation for the work Our Future Health is doing. The level of community engagement, experimentation, evaluation, and willingness to continuously improve their approaches was impressive. And you know what? There is more. They are doing all this while striving to become financially self-sufficient by 2030. That takes considerable dedication, especially when you consider the scale of the work involved in improving representation and addressing health inequalities. For me, the event reinforced how important it is to understand the barriers people face and evaluate whether the interventions we introduce are actually addressing them.
My sincere appreciation to Anne Pordes, Dr Kirstin Purves, and Dr Stuart Jarvis for sharing the excellent work and collective efforts they have put into building a more representative health research cohort through Our Future Health. I also appreciate the other attendees for their contributions during the breakout discussion, which brought some of these ideas into a more practical conversation.
Special thanks to Dr Brieuc Lehmann, Charlotte Misseldine, and Dr Toral Gathani for organizing the event and creating an environment where conversations like these can happen. Bringing people together to share their experiences, challenge ideas, and learn from one another is an important part of advancing inclusive research and addressing health inequalities.
It was wonderful to see the depth of commitment behind this work and to have the opportunity to contribute to these conversations. I came away with a greater appreciation of what is being done, a better understanding of some of the challenges involved, and a few more questions that I would genuinely love to explore.
About the author
Peter recently completed an MSc in Data Science at the University of East London, building on a background in microbiology and healthcare administration. My research explored patterns of recorded GP access activity across England and how data choices affect our understanding of healthcare services. I volunteer with the DSxHE Data Diversity Theme, where I am particularly interested in whose experiences health data captures, whose it misses, and how research can better reflect the communities it aims to serve. I enjoy volunteering more broadly, including supporting social housing projects with St. George Housing, and finding practical ways to use my skills to contribute.
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).
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