When I entered the sector in 2020, during the pandemic, I was surrounded by language that sounded like progress and a commitment to change. Empowerment. Equity. Inclusion. These words were everywhere, from funding calls to partnership meetings. Every public health institution has its own version of these commitments. But as I learned, the gap between policy and practice was greater than I could have imagined.
Listening to communities, predominantly Black, Asian and minority ethnic communities, describe their experiences of the very systems that were using this language told a very different story. The medical scepticism project was one of the first times I heard them in detail, in 2021-22, at the height of the pandemic. We interviewed 120 people across South London. And what the research confirmed was that the scepticism was well-founded in the experiences of racism, discrimination and exclusion from a public health system not designed for them. Years of being spoken about, consulted on, and still ignored. This has been the common thread through all of the work I have done, and still do, whether in cost of living, mental health or air pollution. We wrote about these patterns across thematic health inequalities in What They Say About Us, Without Us.
“I don’t believe there’s no way I can’t have experienced discrimination within the healthcare system, because I think the system is geared towards being discriminatory.”
— Participant, Medical Scepticism Project
As I progressed to larger programmes, the gap between policy and practice only widened. I would meet potential institutional partners who said all the right things. Equitable. Trauma-informed. Committed to inclusive and community-led research to influence decision-making. But when the work actually started, I found that the language did not translate into practice.
I remember times working with institutional partners where I was met with confusion when explaining why we wanted to take an approach that was disruptive to traditional methods. It cost more, took longer, and was more uncomfortable for the team. But the track record showed it was more impactful for the communities. This became a constant friction, especially due to my own positionality, from the communities I am working with, and working between them and institutions. I am accountable to both for the work I do.
But the disconnect did not just show up in how the work was designed. It showed up in how people were treated within it.
Another example that will be familiar to many in this sector: how community partners are valued. Whether they’re community organisations, researchers or participants, delayed payments were an accepted norm. The same organisations applying pressure to kick off and hit deadlines were the ones where invoices were still being chased weeks and months later. This hits harder when, in my experiences, they exceeded five and six figure values.
In 2023, NIHR, the Health Research Authority, and Health and Care Research Wales publicly acknowledged that “slow and complicated payment procedures for public contributors” are “a key barrier to inclusive and accessible public involvement in UK and Ireland health research.” They named inflexible payment systems, inconsistencies within departments, and contradictory information as specific issues. The funders themselves are saying their own systems undermine the relationships the language promises.
These weren’t just isolated problems. They were patterns. And they revealed something important. For some teams, the language of inclusion is not a commitment to practice. It is a framing to secure funding. The words get the application over the line. What happens after that is a different conversation. Read more about the patterns diagnosed from five years of practice in our latest white paper, The Inclusive Research Collaborative.
A 2022 scoping review in Health Research Policy and Systems found that frontline staff across the sector had “heard the term” co-production “but could not define it,” preferring instead to describe their work in vaguer language like community engagement. A separate review in Health Expectations analysed 979 articles using the terms co-production and co-design and found eight distinct definition clusters, with over a third of articles providing no definition at all. The same words, used everywhere, meaning different things depending on who is in the room. I saw the same thing when I started Elysium London. There is no shared definition for inclusive research across the sector. Everyone uses the term. Almost no one means the same thing by it.
The words I use carry weight. They shape how I fund, how I design, how I deliver, and how I work with people. When I say inclusive, it means something specific about who holds decision-making power and at what stage. When I say equitable, it means something specific about how resources are distributed and on whose terms. Not every team that uses those words means the same thing by them. That’s part of the problem. The language has become so widespread in the sector, embedded in every NIHR funding call, every Wellcome Trust brief, every trust’s equality, diversity, and inclusion strategy, that teams adopt it without interrogating what it means for how they actually operate. They’ve learned the vocabulary, not the practice behind it.
The first thing I do whenever I train or advise a team is ask how they define the terms they use. Not a dictionary definition. A working definition. What does inclusion mean for this project, with this community, at this stage of the research? What does equity look like in how we pay people, how we share data, and how we make decisions? It matters for the communities these words are supposed to serve. They have heard the promises before. They are watching whether the practice matches.
“If the team cannot answer those questions specifically, the language is window dressing.”
And it matters for the teams and institutions using the language too. Because there is a reputational risk that many organisations are not seeing. If you are publicly committed to equity and inclusion, and your practice tells a different story, the people closest to the work will notice first. Community partners. Researchers on the ground. Participants. And in a sector that runs on relationships and trust, that causes long-term damage, for the institution and for the communities it is supposed to serve.
When NIHR mandated inclusive research design as a condition of funding in November 2024, they acknowledged “there will be a learning curve for all stakeholders, much like when PPI requirements were introduced.” The funder itself recognises that the sector is not yet ready to deliver what the language promises. That honesty matters. But it also confirms the scale of the problem. Is your team ready?
Make sure that definition is shared. Make sure your team understands what it means in practice. Make sure you can deliver on what the language promises.
Because if we can all be clear about what we mean when we use these words, we are a step closer to creating the outcomes that, through the language we share, we are all supposedly committed to.
Define what you mean. Then deliver it.
Muhammed Rauf
Founder and Managing Director, Elysium London
muhammed@elysium.london | elysium.london