Beyond representation: Power, privilege, and structural barriers to research equity

Health and care research in the UK needs to be more inclusive. It is of particular importance that people from Black African Diaspora Communities (BAFDC), who continue to face some of the greatest health inequalities in maternal health, chronic health conditions, mental health and healthcare access, are included in health and care research and can participate, if they wish.

As part of my research, I co-produced a realist review (a type of research that explores how and why complex interventions work, for whom and under what circumstances) with members from BAFDC across the UK health and care research system. Our aim was to uncover the deeper, often hidden reasons why people from these communities are excluded from research – and how that can change.

What is a realist review, and why use one?

Realist reviews explore how and why things work – or do not work – in different situations. They focus on the idea that people respond to things in different ways depending on their circumstances. These circumstances, or contexts, can influence how people reason and respond to resources and opportunities available to them.

Understanding these mechanisms is crucial for tackling complex issues like racial equity and improving participation in health research. It helps researchers design better, more inclusive approaches by identifying hidden factors that affect whether people take part in health and care research.

We know that people from BAFDC have many distinct and varied lived experiences. Our co-produced realist review, developed with members of BAFDC communities, explores these experiences in depth. It highlights the structural barriers that are limiting inclusion and participation for Black African Diaspora Communities in the UK health and care research system and offers new theoretical insights to help create a more inclusive health and care research system.

Did you say Lego?

The co-production group used Lego to metaphorically model the current health and care research pathway. They described it as:

‘Inaccessible, complex, uncertain, tokenistic, exclusive and divided’

From these discussions, we identified four key concepts:  service, human experience, oppression and narratives. These helped us shape a theoretical framework of five key theories that we used to guide the realist review.

Five theories that help explain what’s going on:

1. Candidacy theory How people from BAFDC determine if they are a candidate for health and care research and what is needed to participate.
2. Narrative theory Narratives and their influence on individuals’ identities and their perceptions of themselves and on the perceptions of people who are not from a BAFDC - how they influence stereotypes and assumptions made about people from BAFDC.
3. Network theory The influence of networks on the decision-making process in health and care research.
4. Critical race theory A way to understand the psychosocial mechanisms behind racial inequity and inequalities in health and care research.
5. Social dominance theory Most societies consist of hierarchies whereby some groups are more privileged than others. This theory aimed to support understanding of the causal factors that create hierarchical relationships.

Results

Understanding causality in depth

In the review we used Initial Programme Theories (IPTs) - early ideas or assumptions about how an intervention is expected to work - to frame the evidence we gathered. The IPTs helped us to clarify the relationships between contexts (C) – the situations or conditions someone has experienced - and mechanisms (M) – the resources or processes that trigger a response - that lead to specific outcomes (O).

We captured these relationships in what are known as Context-Mechanism-Outcome configurations (CMOCs) to give us a deeper understanding of causes and effects.

White space, trust deficit, implicit and complicit bias and Processes that affect inclusion and participation

Through analysing 43 documents, developing 8 initial programme theories (IPTs) and 17 context-mechanism-outcome configurations (CMOCs) we were able to explain more about the inclusion and participation of people from BAFDC in health and care research. Four key areas emerged: health research being dominated by a ‘White space’, broken trust, implicit and explicit bias, and systemic processes affecting inclusion.

Health and care research as a White space

The review indicates that health and care research system is predominantly a White space, shaped by leadership and structures that privilege White populations and uphold racial hierarchies through social dominance. This results in racialised exclusion, with less funding, fewer opportunities, and recruitment practices that marginalise people from BAFDC.

The continuum of broken trust

There was evidence from the review that broken trust between BAFDC, and health researchers is rooted in historical injustices like colonialism, slavery, and medical abuse, along with ongoing racism and cultural trauma. This deep mistrust is made worse by a lack of meaningful relationships, past negative healthcare experiences, and limited visibility of research benefits. Researchers’ credibility and cultural humility are crucial for rebuilding trust. Strengthening relationships between health and care researchers and people from BAFDC through genuine involvement and co-production is key to improving participation and trust in health research.

Understanding Implicit and Complicit Bias

The review shows that institutional norms and a lack of critical reflection among health and care researchers contribute to implicit and complicit bias. These biases are often maintained by harmful narratives influenced by ideologies of socially dominant groups, leading to the ongoing underrepresentation of BAFDC in health and care research.

Organisational norms often prioritise ‘getting the job done’, such as meeting recruitment targets, which can discourage discussions about racism. Political narratives can minimise racism to individual acts rather than systemic issues, shifting blame onto minoritised communities and resulting in ineffective individual-level interventions.

Processes that affect inclusion and participation

Finally, the review reports that inclusion and participation of people from BAFDC in health and care research are influenced by research prioritisation, public involvement (PPI), historical policies, and language use. PPI is often undervalued with some viewing it as unscientific, leading to poor relationship-building and mistrust. Structural racism embedded in policies and political narratives creates barriers to belonging and trust. Additionally, when communication does not reflect the cultural needs of BAFDC communities, it further alienates them and undermines their sense of safety in research.

Why Are People from BAFDC Still Underrepresented in Health Research?

This review highlights how a complex blend of power, privilege, bias, and trust issues are shaping the health and care research landscape. It offers a new, theoretical framework to better understand the structural challenges that are preventing people from BAFDC from taking part in research.  The findings support the need for meaningful, inclusive changes, aligning with recent funding commitments to make inclusion a priority.

Read the full review in Health Expectations.

A personal perspective

As a researcher and nurse who has worked in the NHS and in clinical research delivery for 24 years, I have observed the impact of exclusion of people from BAFDC in health and care research. I had the opportunity to address this challenge through an NIHR clinical doctoral research fellowship. Through co-producing and undertaking a realist evaluation to develop an inclusive health and care research system with people from BAFDC, I hope the findings will create more opportunities for people from BAFDC to be able to participate in research to improve their health outcomes.  

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About the author

Eleanor Hoverd is a Research Fellow in the Workforce Learning and Research Group in the Nuffield Department of Primary Care Health Sciences, University of Oxford.

Follow her on LinkedIn at www.linkedin.com/in/eleanor-hoverd-009744aa