PA19 Creative patient and public engagement amplifies the voices of people living with eczema

Abstract Qualitative research has effectively captured the views and experiences of stakeholders and revealed the degree of suffering associated with eczema. We aimed to amplify the voices of people living with eczema and to convey this message beyond academic manuscripts to a broader audience, using an ambitious, multidisciplinary patient and public engagement project led by creative researchers. We have worked with patient communities to find meaningful, thought-provoking ways to record and amplify eczema voices, using previously reported and newly collected quotes to describe their experiences. A combination of creative visualization methods, professional voice actors, synthetic speech synthesis and sound artists has been used in our project called ‘surface echoes’. A script for participatory performance and a digital audio of the powerful and moving quotes is available for public release. Themes presented in this work include hurtful comments about visual appearance and the mental burden of embarrassment and shame (‘it’s a kind of social handicap during those periods when it is bad’); pain as well as itch; lack of clarity around topical and other treatments (‘I think this “trial and error” is a very primitive form of medicine’); the challenges of communicating effectively 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 participants also reported positive and validating experiences: ‘I felt listened to…it was a conversation’ and their imagination of a better future, for example, ‘…consistent advice about caring for your skin’ and ‘…taking the stress out of it’. We have tested the output material with a range of stakeholders from groups that patients with eczema identified as being important, including medical and nursing colleagues, academic researchers and the general public. Feedback gathered from these tests will be used to capture the impact of the material. This work has been designed to raise awareness, promote discussion, reduce stigma and increase understanding of eczema. The presentation to healthcare workers has been specifically requested by the participants whose voices are amplified, to guide an empathic treatment approach, improve discussion with professionals at all levels and inform future clinical research priorities. This work was funded by a ScotPen Wellcome Engagement Award and conducted in partnership with Eczema Outreach Support.