Using co-design to help people living with epidermolysis bullosa with the effects of pain and itch
What is the problem we are solving?
Epidermolysis Bullosa (EB), also known as 'Butterfly Skin' is a rare, extremely painful, genetic blistering condition that causes the skin to become very fragile and tear or blister at the slightest touch (1). DEBRA is a a national medical research charity and patient support organisation, established in 1978 by an EB parent, providing life-long practical and emotional support for people affected by EB today, and funding research for treatments and cures for EB tomorrow.
In 2023 over 200 people from the EB community contributed to an insight study run by DEBRA. The study revealed many aspects of living with EB for which there are opportunities to improve.
As part of their effort to help people living with EB, DEBRA partnered with the Helix Centre to co-design a product or service to help with one of the challenges revealed in the insight study.
A survey completed by 70 DEBRA members identified the challenges that would have the greatest benefit for people living with EB if addressed. From an extensive list of options 'skin pain and itching', 'difficulty moving around' and 'lack of EB suitable products' were prioritised.
The focus of this 6 month project was therefore to co-design a solution to 'help people with pain and itching move around and interact with day to day items'. It was a collaboration between The Helix Centre, DEBRA and the DEBRA members.
Our soluion
A Community Directory
Through a process of co-design we developed a Community Directory which allows people with experience of EB to share products and services amongst each other, that they have had either good or bad experiences of. It enables the EB community to share non medical/researched recommendations, workarounds and adaptations so everyone can benefit from this shared knowledge.
Throughout the project DEBRA members told us they found great benefit in sharing experiences with each other, for example:
"A few friends with EB… I know them through DEBRA and I asked them what footwear works for them, they said Sketchers so I'm going to try them"
- person living with EB
The Community Directory has been thoroughly tested with the EB community and real product reviews are being gathered. The next steps are for DEBRA to explore the options for building and launching this directory. There are a few factors being considered that will be explored and planned in 2025:
- Finding the best way to gather enough product reviews from members, and to keep these up to date.
- Aligning the directory with new technology currently being introduced at DEBRA.
- Identifying the right partners to deliver this project to maximum effect for members and within a reasonable budget for the charity.
A 'vibrating pad'
We also created a prototype of a 'vibrating pad' which we are using to test the hypothesis that vibration could reduce itching of the skin for people with EB. The pad is made from vibrating motors enclosed in a mat that has cooling properties so the user could benefit from both vibration and cooling. The pad concept was built following a participant telling us in the discovery research phase that they used a similar item but it covered only a small area of skin at one time.
The vibrating pad prototype is at an early stage and requires more testing with people with EB to understand its impact. DEBRA will continue to test this product with their membership, and seek the advice of EB healthcare professionals as well in 2025. If this research shows that this could be a very beneficial product for people living with EB, DEBRA will identify the best partners to work with to develop this prototype. We don't anticipate the product moving to a manufacturing stage in 2025.
Our approach
At the start of the project we prioritised an EB challenge by running a survey amongst DEBRA members to identify 1-3 challenges of living with EB (identified in previous research) that if improved would have the most impact. From this we identified the effect of pain and itch on moving around and interacting with products as the topic of our discovery phase.
We did in depth interviews with a diverse range of people with EB, those supporting them and healthcare professionals to understand the effects of pain and itch. After synthesising the insights we identified four questions to brainstorm solutions for. These were:
- How might we support safe play, development and independence in the home for people growing up with EB
- How might we make it easier for people with EB to customise their surroundings with a soft coating
- How might we help people with foot pain to walk more comfortably for longer
- How might we make the dressings change process faster and less painful
With DEBRA members we brainstormed ideas for these questions. Following this we ran online sessions where DEBRA members selected two concepts, the Community Directory and Vibrating pad to be developed into prototypes.
Throughout the project members told us that designing breathable and frictionless shoes would have the greatest impact on people with EB. We gathered a lot of insights about this but shoes were not prioritised for prototyping because of the complexity of the requirements and likelihood that a prototype would not be high fidelity if created during this project.
Helix designers Alice and Alex undertaking public engagement at a DEBRA event.
We created a digital prototype of the community directory and ran online sessions to develop the finer details with members. We then tested it in person with 3 members, allowing them to use the prototype on a mobile phone and feedback. Gathering product reviews to populate the directory is essential for success and we are now encouraging participants to submit reviews to the directory, for example by asking the DEBRA Community Support Managers to discuss it when meeting members.
We also created a prototype of the Vibrating pad, intended to test the hypothesis that vibration on a significantly sized patch of skin, using a cooling fabric would reduce itching. DEBRA are working on ensuring the necessary safeguards are in place before testing this on members.
At every stage of the project we involved people with EB and those supporting them, both through online focus groups and in person discussions. For example a group of DEBRA members helped us design the questions in the initial prioritisation survey and a separate set of DEBRA members tested the prototypes at the end of the project.
Impact so far
The project engaged more than 30 people with EB and those supporting them in developing the Community Directory in either 1:1 or group sessions.
'I met with Alice, and we had a productive meeting and good useful insights. Thank you for letting me know of it!'
'It was a really lovely interview, my son thoroughly enjoyed himself!''
- project participants
Once the Community Directory has been built and is hosted on the DEBRA website (or similar) it can be of benefit to everyone living with or supporting someone with EB, hopefully beyond DEBRA members, by enabling them to share their knowledge.
Co-design with the EB community not only means we get the products right for the people ultimately going to be using them, but it ensures DEBRA is spending charitable donations wisely, and with the maximum impact.
The Community Directory came about from feedback throughout the project from DEBRA members telling us they found great benefit in sharing experiences with each other. The vibrating pad concept was built following a participant telling us in the discovery research phase that they used a similar item but it covered only a small area of skin at one time. And when presented to more members, the idea took off from there as more people could see how this idea might benefit them.
Thank you to the EB Community for taking the time to join this project - your involvement is never taken for granted!
Throughout the project we used templates and documents, for example research discussion guides and brainstorming processes which DEBRA can reuse to do more codesign to help people with EB in future.
More info
If you are interested in applying the Community Directory or Vibrating pad solutions to your context, or partnering with the Design Strategy Team to work on a similar project get in touch.
Alice Gregory - a.gregory@imperial.ac.uk
References
