Clear Solutions for Engaging Black Communities in Crohn’s and Colitis Research
ClearView has been working with Crohn’s & Colitis UK to:
gain insights into the reasons why there are few black people who participate in research
come up with clear recommendations for solutions that promote engagement from black people in research.
Crohn’s and Colitis are the two main forms of Inflammatory Bowel Disease (IBD) and can affect people from all backgrounds, regardless of age, ethnicity or gender. People who are diagnosed with Crohn’s and Colitis will experience symptoms that include pain in the tummy, weight loss, fatigue, and recurring or bloody diarrhoea (learn more here). As it stands there is unfortunately no cure for Crohn’s and Colitis, so the treatments aim to relieve the symptoms and prevent them from returning.
Crohn’s & Colitis UK recognises the importance of reaching ethnically diverse communities (and in particular, black people) with culturally appropriate support and engaging them in research. ClearView recruited a co-creation group of participants from black communities with lived experience of Crohn’s and Colitis to co-design the research. The ClearView team conducted interviews and focus groups to explore the reasons why there are few people from black communities who participate in research.
The findings from the first stage of the research were used as a starting point for the Clear Sprint, which was held in September. A Clear Sprint is a solution-oriented, five-step process that uses design thinking methodologies to tackle wicked problems and generate big ideas.
The Clear Sprint engaged participants from black communities with lived experience of Crohn’s and Colitis, along with stakeholders from Crohn’s & Colitis UK.
The Sprint begins with:
Mapping, where all the information regarding the problem is laid on the table and discussed.
Ideate, where the participants sketch solutions to the problems that were framed in the mapping section.
Decide, where all participants vote on the components of the solution sketches they want to take forward.
Prototype, here the participants form groups and create a rapid prototype of the solution sketches.
Test, this stage is where the groups present their prototypes and receive feedback on them.
During the Sprint, the participants identified four crucial aspects that should feature in the prototypes:
Destigmatise the research process, making it more fun and accessible
Incorporate some element of social media presence
Collaborate with community leaders trusted by black communities
Facilitate a process where stories are able to be shared widely
One of the creative prototypes developed on the day was #crohnsandcolitisoncam, a photo ethnography project where disposable cameras are handed out to black communities and given to people who have lived experience of Crohn’s and Colitis. They will take pictures of their everyday lives with the disease and submit these to Crohn’s & Colitis UK. This will enable people from black communities to take control over the information they choose to share and will also allow them to participate in a fun and creative process.