Product development
The Helix Centre
We recently teamed up with The Helix Centre, part of Imperial College London, to codesign a product that will improve quality of life for people living with EB. After a lot of work with our members (read more below!) we have now wrapped this project up and have come up with two prototype designs, an online directory of products recommended by the EB community, and a vibrating pad that could help reduce itching.
To find out more about the project, the project approach and DEBRA member involvement, you can see the write up on the Helix website.
We started by taking the key challenges that people living with EB face from DEBRA’s EB Insights study from 2023. We then designed a survey with our members to understand which challenges our members would like this product to focus on. The survey revealed that our members would like to focus on overcoming pain and itch while moving around. Now we start to narrow this down.
We interviewed over 10 members and healthcare professionals to get more in-depth context around these challenges. These interviews have helped us narrow down our focus further, and with the help of another small group of members, we’ve narrowed our questions to explore further to:
- How might we support safe play, development and independence in the home for people growing up with EB?
- How might we improve the dressing change procedure to make it faster and less painful?
- 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 walk more comfortably for longer?
These key questions were explored with our members at Members Weekend 2024.
After analysing all the data from our members from throughout the project, the experts from the Helix Centre have pulled together a list of around five products that they could feasibly prototype for the EB Community.
We had a meeting with members on 12 June to discuss what product would make the biggest difference to you? To help us decide which product we will build. After discussing many great ideas, we have finally reached stage 4 of the project!
- An online resource, or directory, of member and expert knowledge to help people living with EB to find the best product for their needs and requirements. This could include a directory of shoes, toys and more, and members could filter their request to include certain features. The directory would then suggest products for them to try, recommended by the EB community.
- A vibrating pad that could help to reduce itching, and in a design that is most versatile and useful for members.
In August, some of our members helped to test the online directory in person with the Helix team, to better understand the workings of it and to see if anything needed changing or improving.
The project came to an end in October 2024, but you can still help us populate the online directory with your own product reviews. We are running a pilot of collecting reviews, to better understand the process and to create the first set of reviews that will appear in the directory. In the first instance we will use the information to understand more about the quantity of reviews we can expect, the detail, and phrasing of them. Have your say and let us know which products or services you use that may have improved an aspect of life, made something easier for you, or more comfortable. If you have multiple products to review, please do!
We have recently wrapped up our project with the Helix centre, co-designing a product for the EB community to help improve the quality of life for people living with EB. Over 70 members have helped to influence and shape this project every step of the way, and together we have designed two prototype products for the EB community, that we are now exploring how to turn them into real products!
The prototypes designed are:
- a Community Directory which allows people with experience of EB to share products and services amongst each other, giving them reviews, and enables the EB community to share non-medical/researched recommendations, workarounds, and adaptations so everyone can benefit from this shared knowledge
- a ‘vibrating pad’ 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.
An enormous thank you to all our members that collaborated with us on this project, we couldn’t have done it without you and your insight.
To find out more about the project, the project approach and DEBRA member involvement, you can see the write up on the Helix website.
More about the Helix Centre’s work
The Helix Centre has already completed some great projects for various healthcare causes. One of their current projects, is working on a way to improve first outpatient appointment attendance for people who have unequal access based on their ethnicity and level of deprivation. To achieve this, they are working with members of the public from these groups to identify barriers they face and co-design ways to support people to attend their appointments. They will then test which approaches have the greatest impact in a research study and review the best methods to achieve this!
We can’t wait to work with you to come up with our very own product for the EB community!