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Work together to enable fairer health research – UKRI

When I was asked if I would like to be part of co-developing the Medical Research Council’s (MRC) public partnerships strategy, it was a simple yes. It is so important that diverse voices are heard in initiatives driven by what I often call “dominant” institutions. These are influential health research organizations that hold the majority of research power.

Our mission for an equitable research partnership

Inclusivity is essential for fair health research. This is a principle that is personally close to my heart. We are a community organization in South London called Mabadiliko. Fostering equitable community partnerships in health research is central to our work and mission.

Participants in the 2023 Mabadiliko event, discussing what an equitable partnership in health research means for South East London.

Participants in the 2023 Mabadiliko event, discussing what an equitable partnership in health research means for South East London. Credit: Kirk Richards

MRC is funded with public money to support research to improve human health. For example, the research they fund and deliver can help inform and improve healthcare. It is also well documented that health influences and is influenced by broader societal factors. That is why MRC’s work has a direct impact on people’s daily lives in a very profound way. It is important that people affected by it are also involved in important decision-making.

Inequality in health research is not acceptable

Much of my focus on ensuring that equality is embedded into normal research practice comes from my personal experiences as part of the second generation of Windrush. I look back at the experiences of my grandparents and parents through a generational lens to see how inequality affects every facet of life.

Our communities, my community, and other underserved communities continue to be disproportionately affected or dying from preventable health problems. It’s not acceptable.

Through my work, I am often asked to speak to communities to understand why they do or do not engage in “desirable” health behaviors. This includes using treatment options favored by the clinical community, such as medications. But in my opinion it is just as important, if not more so, to also hold a mirror up to the healthcare system and interrogate their role in this generational inequality. I am proud to work with system partners every day on this journey.

Participants in a discussion group during the 2023 Mabadiliko event

Participants in a discussion group at the 2023 Mabadiliko event. Credit: Kirk Richards

I was raised by an incredible social activist, my mother Hillna Fontaine, who founded Mabadiliko. She has given me the privilege of an educational pathway that has given me access to spaces where power is exercised and decisions are made regarding health and health research. She has also provided me with a platform to use my voice. It’s important that I do this wherever I can.

My role in co-developing the strategy

I was part of an External Advisory Group (EAG), which consisted of ten external partners. I attended four sessions in total. These were facilitated by an external vendor, Vocal, who were commissioned to gather insights, suggestions and views on future MRC priorities for their public partnerships strategy.

In the first session, we reviewed documents and information from MRC on this emerging strategy. It was really good to have a space without MRC colleagues to share, think, debate and plan our approach when we were all together.

The second meeting was a workshop with MRC colleagues where we discussed the scope and priorities of the new strategy. At later meetings, MRC colleagues brought up a draft strategy for discussion. My perception was that the purpose of the session was to focus on the tactical elements; the words, the strategy and the actions. In fact, the group focused much more on culture, magnitude of change, courage, trust and the human element of change.

Stimulating personal reflection

We invited them to provide personal reflections on how they found the joint development process. I hope this was helpful, but perhaps unexpected to MRC colleagues.

We asked questions like:

To what extent do you personally feel connected to this? To what extent do you understand whether your broader colleagues agree with this? What could changing the status quo on power sharing mean for you personally? Your own professional or personal identity?

The conversation was a bit awkward and awkward, but in my experience these conversations often start that way. And I think we’ve collectively gone through that. I was proud of both my EAG and MRC colleagues for this. It can be difficult to focus on feelings when we are often guided by facts.

Pushing the ambition

We have had many good debates about who is (and is not) included as a respected partner in the research system. We shed some light on the world outside ‘dominant’ institutions such as UK Research and Innovation, for example the perspective of community researchers. We all know our little worlds and don’t always know what’s out there. I would like to think that we have helped achieve the ambition and provided a constructive challenge.

For the last session, I think most of the EAG was left feeling that there is probably room for improvement and opportunities for greater ambition. But most of all, we felt that we could see that MRC colleagues had listened and taken action on some of our key considerations and recommendations. I don’t always see that reflected in the work I do.

Recognize your individual strength

When I work with colleagues in the healthcare and research systems, they often feel paralyzed by the magnitude of the changes and don’t know where to start. Sometimes this results in the hope or assumption that these challenges can be solved at an organizational or institutional level, for example through strategies.

But I want to encourage all of us to remember that power is also within us as individuals. All of us. We can all do something every day, no matter how small, to help the collective effort toward equity in health research and services.

Find out more

In 2022, MRC commissioned a study on public involvement in research, with a specific focus on non-clinical healthcare and biomedical research. The review examined the culture and practice of public engagement within MRC and the external research landscape. The recommendations from this study formed the basis for the joint development of the MRC strategy.

In 2023, MRC held a series of joint development workshops with stakeholders, including public partners, researchers, funders and public engagement and engagement professionals. During a public consultation in January 2024, everyone was invited to have their say on the draft MRC Public Partnerships Strategy. The final strategy will be launched in the summer of 2024.

Top image: Healthcare professionals, researchers, commissioners and community members explore what an equitable health research partnership means for South East London at a 2023 event organized by Mabadiliko. Credit: Kirk Richards