Introduction 

In March 2022, I found myself seated onstage at Birmingham’s Midlands Arts Centre, moments away from presenting research on the social determinants of health. Alongside me were two of my colleagues and dear friends, Dr Celestin Okoroji and Dr Jolyon Miles-Wilson — both quantitative researchers and social psychologists — with whom I'd been collaborating as a founding member of Black Thrive Global's Research Institute & Observatory. Together, we had been on a journey to map social inequalities and explore their profound impact on health and wellbeing within Black communities across Britain.

Our presentation that day marked a new and important phase of our work: an assembly in Birmingham¹, through which we aimed to engage communities in shaping what we thought would be an ongoing, ten-year National Lottery-funded research agenda ². Our collaborative work over the preceding year had focused on developing a shared measurement system that gathered and analysed public systems data across diverse domains — education, employment, justice, social care, and healthcare, to name a few. This system allowed us to track the inequalities experienced by Black communities and examine their broader implications for health, wellbeing and quality of life.

It was my job to find ways of making complex, large-scale quantitative data meaningful and accessible to community members. This meant starting a critical conversation around what it might mean for Black communities to actively shape, influence, and even challenge prevailing research agendas in ways that reflected our own priorities and concerns. For that reason, our presentation wasn’t about simply showcasing polished results, it was a dialogue to collectively explore and ask ourselves some crucial, if difficult, questions:

• What would it mean for Black communities to have full control over our own data?
• How could Black-led community research serve as a tool to challenge and reshape unjust and inequitable public systems in areas like health, education, and justice?
• How might empowering Black communities to lead on research agendas contribute to meaningful, systemic change around the issues impacting us most? 

These questions underscored our mission: to forge a path for Black communities to have not only a voice, but also full agency in research and knowledge production, working toward lasting, community-driven transformation. 

My experience of community-led research

Since my involvement in the Black Thrive Birmingham Community Assembly and that day on stage, I’ve engaged in several research and data initiatives designed to challenge power imbalances and bring Black and other racially minoritised communities into the heart of research agenda-setting. 

I’ve walked alongside several Black and racially minoritised community groups as they have embarked on and developed their own research initiatives, generating unique findings, and piloting disruptive methods of knowledge production. The projects I’ve worked on are linked by a common commitment to drawing on lived experience and knowledge alongside rigorous research expertise to understand and advance solutions to problems that have long been sidelined within traditional research agendas. They have also been crucial in shaping my own understanding of what qualifies as genuine community-led research (CLR). This has included developing a personal philosophy for how true CLR might be seen as distinct from other research approaches, which are simply ethical and/or participatory.

Rather than offering a minimal role for communities - for example, developing research initiatives that are merely “community informed”, with community members serving primarily as (un)paid advisors to researchers - I see true CLR as having a maximal role for groups most directly impacted by a particular problem under investigation. This requires that communities are not merely ‘consulted’ or ‘engaged’ by research organisations, but, at a minimum, share leadership or, ideally, have complete ownership over a given research agenda from the outset. As such, CLR, at least to my mind, can be characterised by offering a far higher degree of power, agency, and autonomy to communities to define and shape research in ways that advance their own interests.

One fairly straightforward marker for assessing the nature of community involvement might be through an analysis of whether funding flows directly into the hands of communities so that the people impacted most directly by the issue under a study are genuinely empowered to set the terms of engagement, without the need for larger institutions to act as intermediaries or drivers of the process. This includes giving communities the agency to invite in external research support and expertise as they see fit, building partnerships grounded in mutual respect for diverse forms of knowledge, shared goals, and a commitment to equitable power dynamics. 

A case study: Community power and Black maternal health

One of the clearest examples of CLR which embodies genuine community power and agency, has emerged through my work with Maternity Engagement Action (MEA) and a group of Black mothers in Birmingham known as the Maternity Ambassadors for Change (MACs).

As we outlined in our recently published research report, ‘See Me, Hear Me: Findings from a Community Research Initiative Led by Black Mothers in Birmingham’, part of the magic of this project was the fact that we started our work by gathering in the community to ask ourselves open questions around how Black communities might take back power from systems, and move towards greater ownership of our own research, data and knowledge production initiatives.

This involved myself and other research colleagues offering ourselves up to our community as members of a highly-trained and skilled Black-led research team - one that was explicitly and intentionally housed within a Black-led community organisation. This structure meant we were liberated to work collectively with our community without the need for larger, or more 'traditional' and 'recognised' institutions to mediate, facilitate or interfere with our agendas and our interpretations of the problems we directly encountered in the system. Additionally, it allowed us to name, with conviction and a lack of censorship, the collective challenges that we were facing, working with a set of questions that we refined together to guide our work following the Black Thrive Birmingham Community Assembly where we first met: What would it mean for Black mothers in Birmingham to have total control over their own data? How could a Black women-led community research initiative serve as a transformative tool in an inequitable reproductive health system?

The open-ended, community-centered beginning of this project was critical. It enabled us to come together and share common experiences, stories, hopes, and concerns about research and knowledge, defining and negotiating the terms of our partnership from the project’s inception. This foundation provided a space where the needs of our community were prioritised, allowing us to challenge and support one another from our respective positions. In one early meeting, MEA’s Founder and CEO, Amanda Maryam Smith, challenged me and a co-researcher to “drop our research jargon” and find simpler and more direct ways to communicate terms like “research” and “data” to a group of Black mothers in Birmingham who had felt disempowered by previous research experiences. This led us to co-create visual theories of change that captured our shared intentions in ways that were accessible and owned by the community members. Throughout the project we opened up in honest discussions about the harm inflicted on community members in previous studies led by universities and the public health system. Listening to these stories clarified a deep scepticism and reluctance to engage in research where community members often felt instrumentalised to serve institutional agendas with little accountability or commitment to share findings and next steps once their knowledge had been extracted.

These authentic and vulnerable conversations were crucial. Without them, we couldn’t address the history of exploitative research or the reasons for distrust in external research agendas. Neither could we validate the painful realities of research “done to” rather than “done with” our community. Holding space for each other’s pain allowed us to explore new paradigms for conducting research, asking ourselves fresh questions about how we might go about our work: What if we challenged traditional research standards and developed a distinctly Black womanist, anti-oppressive approach to working with data? How might we reconceptualise research as a process that values emotion, lived experience and trauma-informed practices over detached or dispassionate objectivity?  

This helped us map out our shared values and enabled a much more explicit negotiation of the terms of our collaboration. Central in this negotiation emerged the desire to prioritise the agency and wellness of Black mothers with recent and often traumatic experiences of the maternal healthcare system - something that led us to adopt a trauma-informed approach to our work, grounded in a combination of Black feminist principles and African-centred healing practices led by Sankofa Healing Creative Arts. Our intentional approach involved holding research workshops late into the evening and on weekends, with babies on chests and older siblings in tow as we went about our work - and designing our workshop themes flexibly and responsively to meet the needs and requirements of the group.

By the end of our process, we were able to distill this approach into a series of seven principles, which we included in our final report. More important than these written principles and outputs, however, was the affirmation and healing that emerged from the process of holding these conversations. Each honest exchange became a critical component in building safety, openness and curiosity around research. In building this trust we were able to come up with new and innovative approaches to group analysis and interpretation of our community-owned data - a process we detailed in our report as part of an effort to develop ‘the collective conceptual tools for liberation’, an essential component of consciousness-raising and storytelling for systems change.³ 

Challenges and limitations

While this project is an especially strong example of CLR as I envision it, it was not without problems, challenges and limitations. There were, in truth, many issues and even some personal frustrations along the way. In terms of funding, for example, a major challenge was that the National Lottery grant that enabled us to convene the Black Thrive Birmingham community assembly, and which supported my work as a researcher based in a community organisation, was suddenly cut after three rather than the ten years we had initially anticipated, for reasons that remain unclear to me. This precipitated my departure from Black Thrive Global and meant our research work ground to a halt until I was able to return to MEA and the MACs in a more piecemeal and voluntary fashion following the completion of my PhD - in part because it was important to me to fulfil the promises we had made to each other as a matter of principle, and to rebuild trust that was lost as a result of our sudden withdrawal of research support. ⁴ 

There were also things about working in the community I would have liked to do differently or better. I would have loved more time with the MACs to better connect our research to the existing literature and evidence base on Black maternal health, and also to the wider socio-political and historical context for our work. Having just another year or two more might have enabled me to provide important support, training and capacity building to a group of women who were excited to go deeper with their research, and who might otherwise have been equipped to continue their systems change efforts with minimal or no involvement from myself as a trained researcher. A few more years would have opened up important conversations and exchanges around how we might strengthen our approach to ethics, involving others in the review of our research processes and plans by establishing a community ethics or steering board that might shape our ongoing work together. For my own part, I would also have loved to explore pressing questions around the framing of our work - how we might consider LGBTQIA+ and other minoritised members of the Black community in our work, and broader but related questions of sexual and reproductive health - a dynamic which hit home especially hard as my wife and I navigated some unexpected and challenging encounters with the reproductive and maternal health system.

However, I think the real gift and joy of this project was that, for whatever limitations were present, there was an exceptionally strong spirit of community power and agency that ran through every stage of our project, with the flow of resources and funding, at least for a time, enabling our community to learn, grow and advance our agendas along the way. This spirit of community power and the committed relational approach to our work could be summed up as ‘an ethic of care in community’. This is an approach that is in part captured in Banks et al's notion of 'everyday ethics' – the daily practice of negotiating the ethical issues and challenges that arise through research with "ethical sensitivity (a capacity to see the ethically salient features of situations)" and through the prioritisation of "relational virtues, such as trustworthiness (reliability and not letting others down)". ⁵ Additionally, it is an approach which I personally prize over and above the bureaucratic practices of larger, more formal research institutions - a style of engagement which can sometimes undermine the agency and power of communities seeking to move the needle in the direction of racial and/or other kinds of social justice. 

Conclusion

In conclusion, despite the challenges encountered along the way, my time working with MEA has proved invaluable in shaping my broader thinking and learning around how to work meaningfully alongside communities, responding to and honouring their desires and expertise as I go. While there is still so much to learn, I have been encouraged to build on this learning in other projects and to discover that others have been interested in learning from our work, too. Among these I hope will include an audience of progressive funders, policymakers and collaborators within the health system whom I hope will see the huge value of the untapped expertise within our communities. It is funders and policymakers who hold the greatest capacity to push for change, possessing the power to put funds directly into the hands of those communities most impacted by systemic issues, and to resource the work of bridging organisations who can help facilitate more equitable partnerships between traditional research institutions, community researchers, and community groups. 

A PDF VERSION OF THIS ESSAY IS AVAILABLE HERE

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This work is licensed under CC BY-NC-ND 4.0  

Disclaimer: The views expressed in this report are not representative of the views of the British Science Association or UK Research and Innovation.

Footnotes

1.  See also this Different Anglez radio show in ways that highlight the hunger and interest of Black communities to be involved in both shaping and leading research agendas.
2. As covered in this National Lottery blog, our work to advance research within the Black community was developed as members of the Thriving Futures Collective, a network of Black-led organisations in Lambeth, Haringey and Birmingham incubated by Black Thrive Global and working towards a vision of the world in which Black people thriving is the norm. The work was supported by the Growing Great Ideas programme within The National Lottery Community Fund with over £5 million in funding over 10 years initially announced.
3.  My colleague Dr Celestin Okoroji has written more about our conceptual approach.
4. In writing this essay, I have come across this blog written shortly after the initial announcement of our funding, which came at a time when philanthropic organisations were publicly declaring support for work to address racism in the wake of the murder of George Flloyd, and at the height of the Black Lives Matter movement. This blog has made clear that funding from National Lottery was only guaranteed for an initial three years, and that further funds were due to be agreed down the line; however, I was likely too far down the decision-making chain to understand the finer nuances of this point, and the reasons funding was not extended despite some of the excellent outcomes and promising approaches that were already emerging from our work in the community.
5.  Banks et al. (2013). ‘Everyday ethics in community-based participatory research’. Contemporary Social Science, 8:3, 263-277. Available here: https://www.tandfonline.com/doi/full/10.1080/21582041.2013.769618