Improving quality of life for people living with EB: developing an interdisciplinary network to evaluate requirements and engineering solutions for a second skin technology
Can the discipline of engineering find ways to improve the quality of life for those affected by Epidermolysis Bullosa? This network of engineers, ethics researchers and those with experience and expertise in Epidermolysis Bullosa looks for solutions to make life better.
The majority of the research in health care focuses on the treatment of disease that affect large numbers of people, so that engineering solutions for rare diseases receive less attention. One of these rare diseases is Epidermolysis Bullosa (EB), which is a group of inherited conditions where the skin, or mucous membranes (the lining of the mouth, gut, or eyes, for example), blister with only mild trauma, friction or even spontaneously.
Whilst previous research on Epidermolysis Bullosa has focused on curing the disease via clinical and biomedical methods, this project looks to engineering solutions to make life with Epidermolysis Bullosa better. It seeks to establish a collaborative network to facilitate engagement between engineers and ethics/social scientists from the University of Bristol and service users and carers from the Cure EB charity team to foster mutual understanding through discussing challenges of the daily life with Epidermolysis Bullosa and potential technical solutions to help improve the quality of the life, for people affected by Epidermolysis Bullosa: both patients and carers.
This network will enable the engineering team to share ideas about how they might be able to develop technologies to help members of the Epidermolysis Bullosa support group. Together they will develop a mutual language, map possible solutions as a network with user experience at the forefront of the conversation and test concepts with an illustrative narration.
Who are the team and what do they bring?
- Dr Mohammad Naghavi Zadeh (Engineering & Economics, University of Bristol) has expertise in mechanical structures.
- Dr Mari-Rose Kennedy (Bristol Medical School, University of Bristol) has expertise in social science and medical ethics knowledge.
- Prof Jonathan Rossiter (Engineering, University of Bristol) has expertise in soft robotics.
- Prof Fabrizio Scarpa (Engineering, University of Bristol) has expertise in material science.
- Sharmila Nikapota and Elizabeth Clark (Cure EB) have expertise and experience of living with Epidermolysis Bullosa and valuable insights into the daily life and challenges of Epidermolysis Bullosa patients and carers. They are able to advise on the user experience and social impact of proposed solutions.