Involving more voices in research through the Race and Ethnicity Advisory Group

Kavita Bains, an assistant psychologist at South London and Maudsley NHS Foundation Trust, is a member of our Race and Ethnicity Advisory (READ) group, where researchers can consult with individuals from under-represented ethnic communities  on how best to conduct mental health research. In this blog, she writes about the barriers ethnic minority communities face in accessing research and how the READ group can help overcome these.

South London is an ethnically and culturally diverse area, with 57 per cent of the local population identifying as ‘non-white British’ and a majority being from Black/ Black British African and Caribbean communities.

The area is also home to South London and Maudsley NHS Foundation Trust, the UK’s largest mental health trust, and King College London’s Institute of Psychiatry, Psychology & Neuroscience. Both organisations collaborate to form Europe’s leading academic centre for mental health research.

Issues facing mental health research

As the dialogue surrounding equality, diversity and inclusion continues, researchers across the UK are recognising the current issues facing mental health research. One of these pressing issues is that individuals from different ethnic and cultural minority backgrounds face significant barriers to accessing and engaging with research.

Effective research is translational and aims to shape our fundamental NHS provision. Without research participants reflecting diverse backgrounds and experiences, the ability to support the many communities that our NHS serves is limited. This is alarming given the mental health disparities that exist between black and minority ethnic communities, and their white counterparts.

Black and minority ethnic communities experience an elevated risk of developing mental ill health and are disproportionately impacted by wider social detriments. This includes, but is not limited to, the experience of racism, intergenerational trauma and economic inequality. Black and minority ethnic communities are more likely to be met with more restrictive methods of care, become users of crisis services and access services via the criminal justice system. For those accessing mainstream mental health services, approaches to recovery may be prone to Eurocentric bias and undervalue health beliefs, linguistic and cultural norms of minoritised communities.

Inclusive mental health research provides an opportunity to expand and transform mental health policy and services to become more culturally sensitive and competent.

Who are the READ Group?

The READ group was formed as one attempt to promote better research practice and seek greater black and minority ethnic representation within research. As group members, we meet with researchers to shape priorities, guide research questions and critically evaluate processes such as ethnical approvals and recruitment strategy. We might question: is the participant burden too much? What support will participants receive? Is the rationale reasonable and inclusive? Our group is made up of members from varying backgrounds: 22 per cent identify as Black/ Black British African, 15.6 per cent identify as Asian/ Asian British Indian, 14 per cent identify as Black/ Black British Caribbean, and 8 per cent as Pakistani. The backgrounds of group members also include Latina, Chinese and Bangladeshi.

We each bring our individual opinions, ideas and reflections. These may arise from our experiences as service-users, or having family or friends as service users, as advocates and from working within the mental health field (or a multitude of these). Before, throughout or after a session I sometimes experience feelings of excitement, drive, curiosity and anger, but most importantly I often leave with a sense of being heard and respected.

What is it like being a group member?

As group members we define and agree on group rules and lead the conversation from our own perspectives. For me, having a space like the READ group reduces the frustration which can arise if you feel insensitively questioned about the known or lived realities that your communities may face. We are appropriately paid and this is important given the emotional effort and time it can take to provide insight and explanation on sometimes difficult topics. Participating in the READ group  allows greater freedom of expression without the restrictive language and norms of the professional class; I know that I do not have to articulate myself in a perfect or ‘palatable’ way to satisfy the white middle class and heteronormative perspective that often dominates.

Inviting READ members, who represent different members of our society to form an energetic and impressive voice, means we can begin to shift power dynamics that can emerge between those historically ‘doing the research’ and those having the research ‘done to them’. This is crucial given the anecdotal and documented experiences of black people and ethnic minority communities being ‘tested on’ for new treatments and having health concerns underplayed or ignored due to systemic issues like racism and education inequalities.

I am pleased to be a member of the READ group as I have the opportunity to influence essential clinical research. I can use my voice to provide some insight into minoritized communities that have traditionally been excluded from research, as well as learn and appreciate from the similarities and differences of others. Going forward, I hope that research advisory groups can represent more people with multiple identities and that the researchers presenting their studies are more likely to reflect the varying members that make up our society.

Are you a researcher who would like to work with the Race and Ethnicity Advisory Group? Visit this page for more information on what you can expect and how to get in touch - it is open to all researchers in the field of mental health across King's Health Partners.