A collaborative story-telling platform to help people living with arthritis take control of their changing narrative

Third Place winning project at ArthritisHack 2017

The Challenge

How might technology be used to improve the lives of those living with arthritis in areas such as communication, emotional health, and arthritis at work?

- ARTHRITISHACK

Flower growth diagram

The Project

In July of 2017, Veterans Affairs Canada published research outlining the critical importance of identity in personal well-being. People draw personal value from their life activities and the social groups they exist, which helps them determine a sense of “normal.” Undergoing a major life transition can disrupt a person’s social expression and sense of “normal”, thereby disrupting their defined identity, causing potentially life-changing distress. This research suggests that changes in personal identity play a major role in mental, emotional, and physical well-being. Pivoting from military service to civilian life, in this case, is one such major life transition.

We found that the higher order problem they have identified can be applied to the major life transition a person undergoes when they are diagnosed with a lifelong condition - such as arthritis. That identity shift can quickly become negative, setting someone on a progressively downward path.

However, these researchers discovered the power of narrative and story-telling in rewriting identity to counteract this negative path. This led us to ask, if someone being diagnosed with arthritis can be intercepted at that point of identity shift and empowered to take control of their narrative, could they successfully soften (or prevent) a negative story?

Read the full report at Veterans Affairs Canada

This led to the design and prototyping of a virtual, collaborative online installation. It takes the form of a 3D garden where people living with arthritis are invited to come “plant a seed” by sharing their story. The platform literally asks them to rewrite their story, giving them control over their narrative.

A customizable “flower” then blossoms in the garden for all other visitors to view. This helps to create an always-available place to visit and be see that you are not alone. The community is literally visible, almost tangible. Staring out over a field of flowers that exist only because they are undergoing a shared life transition creates a sense of belonging. Their normal still exists - it's just growing.

An e hiding in a Big Top
An e hiding in a Big Top
An e hiding in a Big Top
An e hiding in a Big Top

Role

My focus before, during, and after the competition was in research and conceptualization. I was also responsible for 3D modelling the garden assets in Cinema 4D, while working closely with the developer to bring all the little pieces together.

Once we had decided on a rough concept at the event, we continued to talk with mentors and experts to validate and reshape our project. As we were distinctly separate from our users, the entire process was a cycle of research and ideation.

The feedback we received during the prototype building process was critical. One example of this is having an expert (a person living with arthritis) tell us we were wrong when we wanted to encourage users to tell a “happy” story. She rightly corrected us by sharing that when she was diagnosed, she was angry, scared, confused - anything but happy. She would have rejected any product that tried to force her to feel anything other than what she truly felt. We learned then, and in countless other moments like it, to redesign from the user’s perspective.

Following the hackathon, as we continued to meet and discuss with The Arthritis Society at their home office in Toronto, I continued researching. It only became clearer that this kind of platform is needed, but that we are far from understanding the best way to implement it. Building solutions for the arthritis community, a massive, growing, and vastly diverse group, is a complex task. The range of motor abilities of this group poses a significant challenge for interaction designers. More research needs to be done before community journalling platforms can reach their full potential.

Sketches of the Ferris Wheel

Very grateful to my team, including fellow students Lucas Di Monte and Aaron Campbell, as well as event organizers Hacking Health and the Arthritis Society.