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.
The wound dressing process, although very vital, is such a prevalent and well-known and established process among clinicians, nurses, carers, and first aiders that there has not been a significant attention paid to further innovation in the wound dressing technologies from the mechanical point of view. This becomes even more important when the serious cases such as Epidermolysis Bullosa (EB) exist where the healing process is not only the case but also the prevention of the wound creation and protection during the healing are concerned.
In order to understand how a renovation in wound dressings used for EB patients can be implemented, it is essential to see what technologies are currently used (conventional wound dressings and especially developed wearables) and what desired requirements for a potential novel candidate are.
What did the project involve?
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 sought 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 enabled 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 sought to 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.
Four monthly meetings were organized with collaborators from Cure-EB and one extra meeting with a specialist EB nurse, Mrs. Caroline McKenzie, to broaden the knowledge of the engineering team.
The team sought to develop a concept for a secondary skin that combines with conventional and standard approved wound dressing, focusing on two main features: Reducing the dressing time, and mitigating the environmental effects on the skin, i.e., friction and impact. To understand how much time, cost, and effort is put together for current dressing procedure of the EB patients, the researchers talked to collaborators from Cure-EB and design an ethically approved questionnaire to distribute between the families of EB patients to ask questions from them about the procedures they follow and the time they spend.
Who are the team and what do they bring?
- Mohammad Naghavi Zadeh (Engineering & Economics, University of Bristol) has a background in mechanical engineering and aerospace structures where he focused on vibration analysis, structural dynamics, and design of mechanical metamaterials. The focus of his more recent research is designing and developing active mechanical metamaterials that replicate the functionality of skeletal muscles.
- Mari-Rose Kennedy (Bristol Medical School, University of Bristol) has worked on a range of national, international, and interdisciplinary research projects in the fields of health and social care, bioethics, and public involvement. She has a background in psychology and bioethics and completed a PhD at the Centre for Ethics in Medicine, University of Bristol where she used a combination of qualitative methods and ethical theory to explore the ethical aspects of using administrative data in epidemiological research. Mari’s research interests include public involvement, health inequalities and provision of health and social care, responsible research and innovation, research integrity and ethics.
- Jonathan Rossiter (Engineering, University of Bristol) is a researcher and the head of the Soft Robotics group at Bristol Robotics Laboratory. Their research also include bio-mimetics, artificial intelligence, composites, sensors and the wider robotics field.
- Fabrizio Scarpa (Engineering, University of Bristol) is a member of the Bristol Composites Institute (ACCIS) and the Bristol Centre for Nanoscience and Quantum Information (NSQI). They are an expert on smart materials and structures. Their research interests are in the field of mechanical metamaterials and they are also involved in the modelling, manufacturing and characterization of natural fibre reinforcements for composites and recycled polymers.
- 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.
What were the results?
The project proved the need for engagement between engineers and end users of a potential biomedical prototype to address the requirements and understand the nuance concerns in product design that without talking to the end users is not possible to notice by engineers.
This idea exchange program included 4 monthly meetings between the technical team from the University of Bristol and the collaborators from the Cure EB charity and partners. The project produced a questionnaire to distribute between EB community of support to understand their requirements and wishes for an advanced dressing. The engineering team also obtained insight into concerns and obtained the materials for prototyping the basic ideas. The advanced dressing, which was also called “MetaSkin”, was the focus of last two meetings where an initial concept was presented to the collaborators from the Cure EB.
The key parameters to understand from the conversations and using of the questionnaires, was the frequency and time dedicated for dressing application or changes. In addition, how this time affects the quality of caring, i.e., are families able to implement a high standard dressing change process? It is hoped that by understanding these issues the research team will be supported to prepare a strong case for a research grant application in the future.
The methods that help aims and objectives of the MetaSkin to be achieved, i.e., reducing the dressing time, mitigating the friction transfer to the skin, and improving the impact energy absorption were discussed. The engineering team came up with a series of primary ideas that enable a realistic approach. They are hoping to take these ideas and prototypes further in future projects.