DOI: 10.12688/wellcomeopenres.26101.1 ISSN: 2398-502X

Creative patient and public engagement to amplify the voices of people living with eczema

Alison Mayne, Keira Tucker, Catherine Street, Sarah Rose Graber, James Brook, Liam Russell, Dee Davison, Claire Doyle, Eczema Outreach Support Youth Panel, Beverley Hood, Sara Brown
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Background Qualitative research has captured human experiences of suffering associated with atopic eczema. We aimed to convey this information beyond academic manuscripts to a broader audience, using ambitious, multidisciplinary patient and public engagement, led by creative researchers. Methods We worked with patient communities to find ways to amplify eczema voices, using previously reported and newly collected quotes describing their experiences. The resulting “Surface Echoes” project combined audio and visual methods, developed by a collaborative team of creatives, working with stakeholder participants. Results A script for reading aloud in small groups, and a digital audio recording were created through a process of collaging the collected quotes, curated by the patient communities, creatives and researchers. Themes presented in this work include visual appearance and mental burden of embarrassment or shame (“ it’s a kind of social handicap… ”); pain and itch; lack of clarity around treatment (“ I think this ‘trial and error’ is a very primitive form of medicine ”); challenges of communicating with healthcare professionals; and the morbidity associated with sleep deprivation (“ It’s impossible to be on sick leave just because you are tired. So I carried on throughout the Spring and then I completely collapsed ”). The curated quotes also report positive healthcare experiences, indicative of good practice: “ I felt listened to … it was a conversation ”. Project participants used creative research methods to develop imaginaries of better futures, for example, “ … sunshine soup” and “… consistent advice ”. The materials have been used with stakeholders including medical and nursing professionals, industrial and academic researchers, and the public. Conclusions This work has been designed to raise awareness, promote discussion, reduce stigma and increase understanding of eczema. The presentation to stakeholder groups prioritised by the participants whose voices are amplified was designed to improve empathic discussion with professionals; it may also inform future research.

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