Citizen science is the beating heart of the Rapid Eczema Trials research programme. We use a range of methods to ensure the patient voice is feeding into our work. One way we achieved this in late 2025 was by inviting our eczema community to participate in one of three online workshops. Through these, we gathered feedback on the project, and explored what people think about the various opportunities and information we provide.
Fourteen of our mailing list subscribers who have lived experience of eczema joined a workshop. These ranged from people who had been involved with the project for several years, to people who had joined in the past six months.
Reasons for signing up
There were a range of reasons why people signed up to receive updates from the Rapid Eczema Trials project. One strong reason was the desire to feel part of something that they are passionate about. Many said they joined because they wanted to help the research and to make a difference.
‘It’s a daily struggle so I think that was my interest… it’s not about like research into any drug or anything, it’s just kind of like trying to find out more about everyday dilemmas that people with eczema face.’
‘I felt so thankful to having joined because it was the first time really that I came across other people that might have had a similar diagnosis.’
Barriers to getting more involved
By far the majority of people signed up to our mailing list do not get involved in any of the other opportunities that are available.
This is perfectly fine, but we wanted to explore whether we are making it easy enough for people to get involved if they want to. A major reason coming out of the workshops was that people just aren’t aware of the opportunities. Although these are promoted in our newsletters, subscribers often don’t have time to read all of the content, or only read the most eye-catching snippets. There was also confusion over what some of the opportunities entailed, which had put some people off getting involved.
Another reason for low engagement was lack of time to take part in extra opportunities, particularly if involvement has to be in a specific time slot. It was also mentioned that people might be reluctant to get involved if the purpose and target audience of an opportunity is not very clear.
‘I’d want to keep this community network etcetera by continuing to develop the trials. I think otherwise it then becomes a support group, which is a very different thing. For me, it’s about keeping the network together with the purpose of continuing to co-produce the trials.’
Final thoughts
We found these online workshops really insightful and thank our community members for sharing their thoughts with us. It was thoroughly heart-warming to hear how supportive people with eczema are of the Rapid Eczema Trials project. We heard, loud and clear, how important research is to the community. It’s not just a support group; it’s a group of people with similar experiences who are passionate about improving the lives of people with eczema through research.
Written by Emma Campbell
Senior Research Fellow