Case study: Amanda’s story: her role in eczema research

Amanda Roberts is a champion of patient involvement in research, and has advocated for best practice in eczema care. Amanda has had moderate eczema all her life, and is a mother of two children with eczema. This is a condition that causes the skin to become itchy, dry, cracked and sore. She has cared for her children and older adults who also have the condition. Her passion to help those with eczema has motivated her to pursue a life in eczema care and research.

Some of the things that Amanda is involved in include being an active member of the Nottingham Support Group for Carers of Children with Eczema (NSGCCE). As a member of this group, Amanda provides a lived experience perspective to eczema, and works alongside NHS healthcare professionals. Find more information about NSGCCE here.

Amanda was a patient carer representative on the committee that prepared the National Institute for Health and Clinical Excellence (NICE) Guidelines for Childhood Eczema. This was created to improve the care for children with eczema by making detailed recommendations on treatment and specialist referrals. Read the guidelines highlighted here. 

Amanda is also a co-applicant for Baby Bathe, a National institute for Health and Care Research (NIHR) funded eczema prevention study, in collaboration with St George’s University of London. This is a feasibility study, to determine whether families would be willing to change baby bathing practices during the first few months of life. If you would like to find out more information about the research being conducted, click here. 

The above are only a small insight into all of the wealth of activities that Amanda is involved in. Her current focus is RAPID Eczema Trials. This is a project intended to improve the lives of people living with eczema, and Amanda is a co-lead of the project. This is a 5 year programme, funded by the NIHR, and sponsored by Nottingham University Hospitals NHS Trust. The project aims to work with members of the public to assess different ways of best caring for eczema. Over the 5 year project, the research team aims to involve as many people as possible, in order to create new knowledge and improve the lives of those with eczema. 

The RAPID project will run several randomised controlled trials (which compare one treatment option with another), that participants can take part in from home. Participants will be able to choose which trials they would like to take part in, based on what is most important to them. In this case, those involved will act as “citizen scientists” in eczema research by prioritising the project’s design themselves. This new way of running trials will allow the research team to answer questions that are unlikely to be considered in a traditional trial design. Some of the questions that RAPID could help answer include “Is it better to bathe every day or less frequently?”; and “Do relaxation techniques (e.g. mindfulness) help with managing eczema itch and improve sleep?”

National Eczema Society and Eczema Outreach Support are also involved in supporting the project. Find out how you can get involved with RAPID here.

Amanda continues to champion eczema research, and is a Clinical Research Network (CRN) East Midlands PPI member. We would like to thank Amanda for her outstanding contributions to research, and we look forward to seeing what she has planned for the future. 

Find how you can Be Part of Research here.