Topic
Date published
10/03/2026
By Deborah Ikhile, Research Associate at NIHR ARC East Midlands
When I think about why we do research, I always come back to one answer: the people at the heart of it.
As a researcher focused on MLTC in ethnic minority communities, I have learnt that working with communities is not a tick‑box activity or a route to recruitment. It is a relationship.
How the journey started
My MLTC research journey began in 2023 when I received an NIHR SPARC award for a cross-ARC project between ARC Kent, Surrey and Sussex (later transferred to ARC East Midlands) and ARC North Thames. The aim was to build capacity in MLTC research and understand community MLTC priorities.
During this time, I connected with African and Caribbean communities through the Community Learning Project (CLIP) group in Leicester, who made one message very clear: research should not be done to them or for them, but with them.
This marked a transformative shift in my approach. What began as an introductory relationship gradually evolved into a genuine partnership. Together, we created an illustration, entitled ’Trust Is Key’ illustration that has served both academic and community purposes.
Over the past two years, this relationship has grown into funded work and new project ideas. What started as patient and public involvement and engagement (PPIE) eventually informed an ARC East Midlands-funded scoping review, expanded my engagement with South Asian communities, and helped form new research questions.
Crucially, I did not ’access’ these communities on my own. My entry into these spaces came through a trusted community engagement officer from the Centre for Ethnic Health Research, an essential bridge in the process.
A new way of working
Along the way, one simple question emerged: “where are the men?”
Women consistently attended sessions for my SPARC project, men did not. During the H-PRIME project, we shifted intentionally. So, we held evening virtual sessions for men, upon their request.
It sounds simple, but this flexibility opened doors and uncovered vital insights about men’s experiences of MLTC care and cultural expectations.
Flexibility turned out to be one of the most powerful tools of working inclusively.
Giving back to the communities: our dissemination event
On November, 6, 2025, we held a community-focused dissemination event to share findings from the H‑PRIME project. In academia, ’outputs’ often refer to journal articles or conference presentations. But communities want something different, and we delivered.
During the event, we held a raffle where a community member went home with an air fryer. This was an unexpected reward for them.
One comment from the day has stayed with me: “tell us whether the research has been successful or not. We want to know.”
It was a reminder that dissemination is a responsibility to the communities we work with.
This was followed by a presentation of the ’Trust Is Key’ illustration to the CLIP group on February, 2, 2026. This presentation was done at the group’s request.
What I have learnt: recommendations for researchers working with communities
Several lessons stand out from my journey:
- Trust is everything: trust grows when research is done with communities, not to or for them.
- Community priorities should guide the work: research becomes more meaningful and far more interesting when community priorities and researcher interests align.
- Invest in your bridge-builders: the relationships I built were made possible by a dedicated community engagement officer who ensured communication, cultural understanding, and continuity.
- Be present and visible: relationships cannot be built from a distance. Meeting people in welcoming, accessible, and culturally familiar spaces changed the whole dynamic.
- Flexibility matters: rigid timelines and fixed schedules do not support inclusivity. A community liaison helps balance research timelines with community realities.
- It takes time, and that is okay: like any meaningful relationship, working with communities requires patience, humility, and consistency.
- Feedback to the communities: communities value transparency, follow-up and want to know what happened with the work they contributed to. Giving back is essential. There is no working with communities without community outputs.
Top tips for working with communities:
- Large groups make it hard for everyone to be heard; smaller groups foster richer dialogue.
- Learn people’s names and genuinely listen to their life experiences outside of the research objectives.
- Allow for rapport building, informal conversation, and co-production — and yes, tea and biscuits help.
- Shared ownership leads to stronger ideas, even if letting go of control feels uncomfortable.
- Community members are experts, treat them as such.
- Working with communities is not as expensive as you think.
Next stop
Our next stop is the Qualitative Health Research Network conference on May 14, 2026, where I will be sharing findings from the H-PRIME project alongside a male public contributor. But really, this is not a ‘stop’ at all. My work with communities continues to grow stronger, and more collaborative.
My takeaway
The ideas born from working with these communities have informed my NIHR post‑doctoral fellowship application and, more importantly, shaped a guiding principle for how we continue to work together:
Act → Share → Learn → Understand
This simple loop captures what research with communities should be – a continuous, evolving cycle of learning and doing. I am excited to keep walking this journey with the communities who have trusted me, challenged me, and shaped how I do MLTC research.
To find out more about this project, click here.