January 24, 2025, by mszteh

My journey into research as a person with eczema

I’d had enough of being stuck in limbo with my eczema. I felt like there was not enough educational material out there for people with eczema, and a lot of the questions I had about my condition remained unanswered by healthcare professionals. So, I googled ‘eczema trials’ to see what research was taking place in the UK for people similar to me who had eczema. I stumbled across the eczema bathing study and instantly completed the screening questionnaire. The study allowed me to contribute to research from the comfort of my home and I was keen to see the study’s outcome. One more question answered about eczema would always be beneficial for the eczema community! Drawing of a brain with the word 'Science' on one side and 'Art' on the other, plus related small drawings around each word.

After completing the study, the opportunity arose to work on a creative co-production project over a few months with Made by Mortals. Made By Mortals ‘Bring Lived Experience to Life’ through audio stories, film, music, theatre and interactive workshops. A story was being created about a person who lives with eczema and decides to take part in research, and the Made By Mortals team wanted individuals with lived experiences to help produce the story. Not only did the project sound novel but also innovative! It was a chance to be involved in other ways, creating content about life with eczema and taking part in research.

We’re halfway through the project now. So far, taking part has consisted of meeting online every few weeks with the Rapid Eczema Trials team, people with eczema from the Rapid Eczema Trials community, and the Made By Mortals team. I initially had no expectations of what the meetings would be like. After all, for me, it felt like the project was the first of its kind to show people’s experiences with eczema!

Silhouette of a person with their arms in the air in front of a sunset. The silhouette is a collage of small images.

During the meetings, we were prompted with questions that considered our personal experience with eczema and research. These cleverly started to craft the storyline and our fictional character for the project. It was a fantastic way of getting our creative juices flowing and our brain ticking! But more than that, I felt the project was an opportunity to have discussions with other individuals who live with eczema and a platform to express my views on my condition. There was no wrong answer and the meetings were an open, non-judgemental and safe space for conversations about the group’s experiences with eczema.

I am sure that whatever comes out as the finished product of the project will be a source of educational content for the public. Not only as a means to show what it can be like living with eczema, but also to bring down barriers within communities to start conversations about clinical trials.

If you would like to find out more about Rapid Eczema Trials, please visit our website or email us on eczema@nottingham.ac.uk

Written by a citizen scientist in the Rapid Eczema Trials eczema community.

Funded by the National Institute for Health and Care Research logo

The Rapid Eczema Trials project involves researchers, healthcare professionals and citizen scientists (people with eczema and parents of children with eczema) working together to answer important questions about eczema by designing and running clinical trials together.

The Rapid Eczema Trials programme is sponsored by Nottingham University Hospitals NHS Trust and is funded by the National Institute for Health and Care Research (NIHR) under its Programme Grants for Applied Research programme (PGfAR NIHR203279). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Posted in Rapid Eczema Trials