Engaging young people in participatory service design for Versus Arthritis
Versus Arthritis commissioned Fiveways to develop and deliver an online research platform that allowed the charity to test and evolve its offer for children and young people with arthritis. Our role was to:
- Work alongside Versus Arthritis to select an online research platform that best met the charity’s needs
- Deliver online research to ensure the voices of children and young people with arthritis were heard in the development and co-creation of the charity’s information and support services.
- Use a “test and learn” approach to embed the ongoing use of an online research platform within the charity.
“Fiveways have a lot of experience in moderating online communities and really understood the level of communication needed and the style to keep young people engaged and motivated in the research. They were extremely responsive to our young people, knowing when to probe to gain a deeper understanding of conversations and providing lots of encouragement and support to ensure young people continued to be involved.
Fiveways are flexible, organised, good listeners, critical thinkers and good at working with you to overcome pitfalls as they arise. I would recommend Fiveways to any organisation wanting to use digital platforms to understand their audiences better.”
Our research included
We developed the “Young Experts” panel to offer 30 young people with arthritis tangible benefits for their involvement in the online research community, for example content to include in their CV or personal statement. We also selected a platform (Incling) that offered participants flexibility, space to be both open and discreet, and opportunities to co-create with their peers.
We used a wide range of activities during the community including asking young people to imagine a conversation with a younger version of themselves, to design a communications campaign, and to discuss situations when they had told someone about their arthritis and things had gone well and when things had gone less well.
Our research revealed
The insight community enabled the Versus Arthritis Team to put themselves “in the shoes” of young people with arthritis, understanding the impact it has on their sense of self, their performance, and relationships. We clarified young people’s key areas of need as:
- The unpredictability of the condition
- People doubting their authenticity
- The side effects of medication
- The lack of understanding that the condition affects young people
- Fear of cancellation and exclusion (rather than adjustment).