Designing mental health research studies with the Race and Ethnicity Advisory (READ) Group

Dr Julie Williams is a Post-Doctoral Researcher at the Centre for Implementation Science, King’s College London, who is working to support the physical health of those using mental health services. As part of a funding application, Julie recently consulted with our Race and Ethnicity Advisory (READ) Group, which provides researchers with an opportunity to hear the views of individuals from under-represented ethnic communities on conducting mental health research.

I was designing a study to support Occupational Therapists (OTs) at South London and Maudsley NHS Foundation Trust to be more actively involved in research. By using the ‘Embedded Researcher’ model, I would be based in clinical services and work co-productively with OTs to design and deliver research strategies, as well as support them to build confidence in reading, understanding, and adopting new research.

I wanted to make sure that service users and carers views were central to the study, especially in any new research. South London and Maudsley has a very varied service user population. I have some experience of patient and carer involvement, however as I wanted to ensure the voices of all communities that use the Trust’s services were heard I was wary of only contacting the people I already knew.

Improving on the study design and recruitment

The READ Group provided views and suggestions on how to design the study, with a focus on ensuring the involvement of people from diverse communities. We met online, and I received written feedback and suggestions from both the whole group and individuals.

The group were very engaged with the study and asked challenging questions. They had suggestions about the study design and recruitment that were particularly helpful. I always had the sense that the group were only interested in improving the study.

Getting a breadth of views including from outside of academia

I made changes to my study design based on the feedback from the group on recruiting service users and carers and the number of people in the PPI group. The group also helped me to think through what is meant by diversity and that this is not just about ethnicity but also about other characteristics such as sexuality.

Getting feedback from an interested and informed group of people outside of the academic world was very valuable. Even though I don’t work in an ‘ivory tower’ the majority of the people I had initially discussed this study with were other academics so I valued getting input from people with different backgrounds.

I really enjoyed meeting the group and would have been happy to talk to them for much longer as the breadth of experiences and input from the group made for an interesting and impactful discussion.

A valuable resource for any mental health researcher

It is a great resource for researchers to get different perspectives from a group who are very passionate about supporting research. The group gave input into all aspects of the study design, not just looking at it from a viewpoint of looking at diversity and I’d recommend other researchers use their advice.

The importance of involving people from diverse communities in research

It is really important to hear all of these voices, because having people from diverse communities and with different viewpoints makes research better both in how it is experienced and the outcomes from the research. It helps researchers understand what the priorities are for different groups and how their projects will be experienced by those taking part. I think as researchers we should also do this for ethical reasons.

Are you a researcher who would like to work with the Race and Ethnicity Advisory Group? Visit the Race and Ethnicity Advisory (READ) group webpage 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.