Caribbean and African Health Network x Crohn’s & Colitis UK

Co-designing information against health inequalities

What was asked?

The national charity Crohn’s & Colitis UK asked us to support the development of bespoke information for Black communities living with Crohn’s Disease, Ulcerative Colitis or Microscopic Colitis – forms of Inflammatory Bowel Disease. Their teams had been working hard to improve everyone’s experience of Crohn’s or Colitis. While Crohn’s and Colitis used to be thought of as conditions that mainly affect people of European or Ashkenazi Jewish heritage, across the world more Black people are being diagnosed. However, Crohn’s & Colitis UK’s conversations with UK community health leaders suggested that Black people living with Crohn’s or Colitis do not see themselves fully represented in information provided by the charity.

To conduct this project our research team proposed a collaboration with the social enterprise the Caribbean & African Health Network (CAHN) who brought in peer researchers – Black people living with Crohn’s or Colitis- to co-design and produce the evidence needed to create bespoke information. That way, every decision and insight during the project was informed by people whose lived reality confronts the issues we needed to raise. Regular planning meetings and joint decision-making between us, the CAHN project team, and the Crohn’s & Colitis UK team were invaluable to ensure the project met everyone’s needs.

What we did

As well as highly participatory, the research process had to be robust, to ensure the resulting information was factual, meaningful and useful to a wide range of different people within this demographic:

This project adopted a co-production approach, integrating the voices of both the public and health professionals to ensure the resource was culturally appropriate and meets the needs of Black individuals living with Crohn’s or Colitis.
A survey of 81 Black people with experience of Crohn’s or Colitis captured a wide range of preferences, unmet needs, and suggestions for the resource. Like all our surveys it was designed and piloted for accessibility of use, accommodating respondents with low digital or health literacy. We mixed closed questions with free text to explore high-level statistics with nuanced views and feelings.
The findings from three subsequent focus groups validated survey findings and enabled detailed content plans for the information resource(s).
As the resource was developed, a reader panel of focus group participants reviewed the drafts and provide iterative feedback to the information designers.

The project didn’t end once the information was finalised. The final resources were widely distributed by CAHN among African and Caribbean Communities, leveraging their extensive network of health professionals and community groups. To maximise reach, dissemination was multi-pronged, utilising digital campaigns and newsletters, community Whatsapp groups, in-person events, and their popular webinars.

What we found

The majority view of our survey and subsequent focus group sample was that culturally tailored information was important to maximise the likelihood of useful advice to manage their conditions- and associated emotional wellbeing. A sense of personalisation to cut through the noise was strongly welcomed, with many respondents currently favouring sources such as family or friends, and searching online such as on Reddit, where answers are naturally tailored to context and the specific ask.

Some of the most popular options for topics in this health information were about being supported to take on racial health inequalities through knowledge, with respondents asking for health disparities to be highlighted, for actionable guidance to navigate the healthcare system and the potential for discrimination from society and health professionals, and to know how their conditions manifest in and affect black people.

The need for personalisation in health information was loud and clear. Participants asked for testimonials, imagery, and stories from Black individuals with Crohn’s and Colitis to enhance relatability. They also wanted to hear about challenges, practical advice, and healthcare professional perspectives specific to the Black community. All of this information needs to be demonstrably evidence-backed; with honest testimonials and research studies protecting against information becoming vague or only moderately relevant.

Read the information resource produced from the project HERE.

“I use Crohn’s & Colitis UK for clear information on managing my condition, personal stories for support, and practical resources like webinars and workplace advice. Their helpline has also been a great help with specific questions.”

A quote from one of our participants about the charity, Crohn’s & Colitis UK

(reprinted with permission)