The Helix Centre

We have 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 are now going to be designing an online directory of products recommended by the EB community, and a vibrating sheet that could help reduce itching. 

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Jump straight to the current stage of the project

 

Stage 1 – survey complete:

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.

 

Stage 2 – interviews complete:

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?

 

Stage 3 – the workshops:

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! 

 

Stage 4 – developing a prototype:

We are now going to develop two ideas, and they are (drum roll please….)

• 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 sheet that could help to reduce itching, and in a design that is most versatile and useful for members.

 

We are looking for members to help us test these products in July, in short 1-on-1 sessions with the Helix designers. If you’d like to help us test either of these products, please let us know by filling in this form, and we can tell you more.

This is when we start getting practical and designing a real product with our members’ help. 

  

Sign me up

If you would like to take part at some stage of the Helix project, please sign up by clicking the button below, and we’ll keep you up to date.

Sign up here

Alternatively, please contact 01344 771961 and use option 1 or [email protected]

We can’t do this project without our members, so we hope you can join us to share your insights and experience that will help us produce the best product possible for the EB community!

 

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!