Helping Crohn's & Colitis UK develop an inclusive patient education programme for people who are newly diagnosed with Crohn's or Colitis
Project aims:
Crohn’s & Colitis UK want to create an online patient education programme. To do this they first wanted to understand more about what would be most useful for people.
Quantitative data:
Crohn's & Colitis UK had already consulted people living with the conditions via a patient consultation and had a lot of free-text responses that they wanted to dive into. We used human and AI powered thematic analysis to understand user needs from this data and look at differences by demographics. This combined method allowed us to explore large datasets without losing human nuance and whilst managing potential biases.
Co-design workshops:
We ran two workshops with people living with Crohn's and Colitis to further explore and co-design what people wanted from a patient education resource. The workshop focused on hearing from people from minority communities who Crohn's & Colitis UK were less likely to have heard from in the consultation.
We learned that when people are first diagnosed with Crohn's or Colitis they are often left with lots of questions and do quite a bit of research. They felt that information was often not inclusive and people need to feel better represented. After their initial deep dive into the research, people then only tend to do small bits of research again, and only when they have specific questions or if things change.
People mentioned that they would like a resource where everything is in one place that they can dip in and out of. They are also keen to learn about their condition from both medical professionals and people living with the condition. People are keen on formats that are concise and engaging and easy to read or watch on the move.
Impact and outcomes:
The project highlighted the importance of a resource as people were often left feeling confused or unsupported early in their diagnosis.
The project helped Crohn's & Colitis UK brief their content designers and learning management system supplier on people's needs. The co-design findings challenged some of the assumptions about what a patient education resource might look like and enabled Crohn's & Colitis UK to design something that better met people's needs.
Thank you to the people who took part in the research - we really valued your honesty and sharing your experiences and needs around the diagnosis and condition. And to everyone in the Crohn's & Colitis team who were great to work with.
Client: Crohn's & Colitis UK
Services: Service Design, User Research, Design Research
Team: Liz Cavallo and Ellie Whittaker from Crohn's & Colitis UK, Charley Pothecary, Hannah Marcus and Kat Jennings, Common Collective