Designing for inclusivity in understanding a rare disease patient journey
The Need
As part of investigating a rare disease space, the team needed an in-depth patient journey outlining both the emotional and transactional experiences of living with the condition.
The Insight
Symptoms Challenge Research Participation: Patients suffering from this condition are not only quite rare, but typically quite ill. Their illness may affect their ability to respond to certain research methodologies.
Not Everyone Wants to Express Themselves through Words: Living with the disease often becomes a highly emotional situation. It can be a difficult topic to discuss and not every patient is willing to dive into this difficult line of questioning.
The Result
Body Mapping (an arts-based methodology) was designed and tested to ensure all respondents would be able to express themselves.
Participants were asked to draw three silhouettes of their bodies:
My Disease as the Weather: To gain insight into the patient’s overall emotional state, participants were asked to draw a weather scene that represented their disease.
The Shape of my Illness: Participants use colors and shapes to describe how they felt about their disease.
Mapping my Pain: Patients mapped their pain and symptoms, allowing them to describe their symptoms without medicalized language.
This alternative methodology allowed patients to illustrate what might be difficult to put into words, uncovering aspects of their experiences that lay “beneath the surface”.