Representation Matters

Published 16 June 2023

We know that everyone with Crohn’s and Colitis has a different experience. We know that for some people there are currently barriers to getting involved in research. This means that research about Crohn’s and Colitis is not always representative of everyone living with the conditions. 

People from ethnic minorities currently have much lower representation in research studies. This includes research into areas that are important to people with Crohn’s and Colitis, such as pain, fatigue and diet. We want to work with communities who are underrepresented in research so we can understand what the barriers are and work to overcome them.

Last year we commissioned ClearView Research, an organisation that specialises in collaborating with groups who are typically underrepresented in research, to help us do this. This research is focused on Black communities, as evidence shows that they are particularly underrepresented in research. This work was co-created with people from Black communities from the outset. The research identified a number of barriers to participating in research for people from Black communities. This included a lack of trust in research, a lack of awareness of the opportunities to get involved, challenges related to accessibility and availability, and a lack of understanding of why taking part in research is relevant.

To read the full report click here.

What now?

We are using the findings to implement change.   

We know that the language we, and others, use can be a barrier. The report highlighted that words like ‘research’ or ‘trial’ can undermine trust because people do not want to feel like they will be experimented on or asked to do something they don’t want to do, like give blood samples. We will work with people from ethnic minorities to help us change the language we use when we advertise research opportunities so that what we say is clear, transparent and welcoming. 

We want to support researchers to create research opportunities that are accessible and inclusive. We are producing a toolkit for researchers to help them think about the barriers for all people when designing and carrying out research.

We need to change how we communicate about research. We will be working with people from ethnic minorities to help us understand how we can present research in a way that is interesting and understandable to everyone, so they want to get involved.

We are also working with other charities, community organisations and people with lived experience to co-produce a film. It will focus on why diversity in patient and public involvement and research matters for African, Caribbean and South Asian people, families, and communities. 

We are also working hard to ensure that surveys we send out reach everyone in the Crohn’s and Colitis community. Crohn’s & Colitis UK chairs IBD UK, a partnership of 17 professional bodies, royal colleges and patient organisations that work together to improve the care and treatment for everyone affected by IBD. We are working with ClearView to ensure we reach as many people with IBD as possible and ensure their voices are heard.  

We know there is a lot to do to ensure we are meeting the needs of the entire Crohn’s and Colitis community. Our work with ClearView Research and our next steps are only the beginning of this work. We want to thank everyone who has taken part so far, and everyone who gets involved in the future.    

Crohn’s & Colitis UK would like to thank Janssen for providing a grant to support this study. Janssen had no involvement in any aspect of the work.

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