Ethnic Minority Health Research Priorities - REPRESENT study

Health and social care research priority setting among ethnic minority populations: a mixed-method study

Why is the research needed

It is very important for different people to be part of health research. This ensures that it benefits everyone and represents the wider population of whom 14% are ethnic minorities. Therefore, we aim to identify the health and social care areas that are important to ethnic minority groups and how these communities view research practices.

What is already known about the subject

People taking part in research are usually older, have higher levels of education but less likely to come from an ethnic minority background. This means that a lot of research studies are not very relevant for most people. Many reasons stop people from other ethnic backgrounds joining in research. This can include not knowing about the study or the process, not being taken care of in the way they like, or the research may not interest them.

Who we will be working with

We will work with members of the community, and the people and organisations who work with them.

How patients and public are involved

We have worked with the Centre for Ethnic Health Research in Leicester to reach different ethnic groups. We want to understand what types of health research are most important to them. We will explore preferences related to study design (recruitment methods, recruitment location, participant contact, feedback of research findings).

What we will do

We will review the scientific literature to see what work has been done already, and then we will consult with a range of different people to explore their views about priority research topics. We will do this through individual interviews and group focus groups that may be online or face-to-face, depending on people’s preference and current COVID government guidelines. These discussions will be followed by co-production workshops to develop a questionnaire. This will be delivered nationally to explore views about research priorities, and the running of research studies. We will work with people from different ethnic backgrounds to understand and share the findings of this work so researchers can focus their attention on things that matter to our communities. We will identify what research people from different ethnic minority backgrounds think is important and why. This work will inform how future research is conducted. This could encourage increased ethnic minority research participation and ensure research findings are more likely to benefit the whole population and not just certain ethnic groups (e.g. white).

When the findings will be available

The findings will be available in 2023.

How we are planning for implementation

The outcomes from this work will be a list of research topics prioritised by people from ethnic minority backgrounds which will be used to inform future research practices. Recommendations for how studies should be conducted will be made following survey opinions and discussions with members of different ethnic minority backgrounds. The evidence from this study will be used to update the BAME toolkit. Findings will be disseminated broadly using community networks, Centre for Ethnic Health Research, Clinical Research Network and National Institute for Health Research.


Winifred Ekezie,