Addressing the Eczema PSP priorities with citizen science

In 2011, the Centre of Evidence Based Dermatology (CEBD) at The University of Nottingham worked with the James Lind Alliance to run an Eczema Priority Setting Partnership (PSP) exercise. The aim was to identify and prioritise uncertainties around how best to treat and manage eczema.

Over 500 individuals took part. The exercise identified 14 priority topics as areas for future research. These included four priorities that were shared by patients and healthcare professionals (HCPs), plus five that were ranked highest by patients and five that were ranked highest by HCPs.

The CEBD has led and contributed to several research studies addressing these priorities. The conclusions of these, and of other studies, have recently been published in an NIHR Evidence Update ‘Eczema in children: uncertainties addressed’. However, research addressing the PSP patient priorities have not been fully addressed. We have therefore started the Rapid Eczema Trials, a project highlighted as ‘Ongoing Research’ in the NIHR Evidence Update.

Rapid Eczema Trials aims to improve the lives of people living with eczema by delivering multiple, efficient online randomised controlled trials. Designed as a citizen science project, it brings together members of the public, researchers and healthcare professionals, to prioritise, design and deliver research that is important to people living with eczema.

‘[It’s] very good to see that those doing research really care about what will be useful to people with eczema’, Rapid Eczema Trials citizen scientist Mars Eddis-Finbow

The project began in September 2022. So far, we have over 500 members in our citizen science community. Many of these people share their opinions with us through surveys. Thirty of them have also participated in our coproduction groups. These groups lead on prioritising research questions, developing research studies and planning for knowledge sharing.

‘Being involved with Rapid … provides a real opportunity for people without a scientific background to make a meaningful contribution to research’, Rapid Eczema Trials citizen scientist Tressa Davey.

Working with our citizen science community, we explored the PSP findings, focussing on the top priorities for people with eczema. We also considered other suggestions arising from our surveys. This led to the following priorities:

  1. How often should you bathe when you have eczema?
  2. Best way to keep control of eczema between flare-ups
  3. Does improving how people react to stress help people with eczema?

These questions all address patient priorities highlighted in the PSP. Our coproduction groups are now working through these, developing the research questions to ask in randomised controlled trials.

 

Women washing child in bath with washcloth

Our first study is recruiting. It will answer the question: ‘Is it better to bathe daily or weekly when you have eczema?’ The Bathing Study will recruit 390 people with eczema of all ages and all eczema severities. We’ve recruited 235 people to the study in 10 weeks. This is an incredible achievement as our standard eczema trials usually recruit around 20 participants per month.

‘Such an easy thing to take part in’, Rapid Eczema Trials citizen scientist Amanda Roberts, talking about her involvement in the Bathing Study.

We have also finalised the second study question. This will be ‘Can using a steroid cream for longer during a flare-up help keep eczema clear for longer?’

It is very reassuring to read of the progress that’s already been made in addressing the uncertainties highlighted by the PSP. It’s crucial that this knowledge is now shared widely, to improve the lives of people living with eczema.

We look forward to sharing the results of the Rapid Eczema Trials studies with you as they arise over the next few years.

Emma Campbell

Written by Emma Campbell, Research Fellow

Originally published at www.jla.nihr.ac.uk and also at blogs.nottingham.ac.uk