Early Interventions for Rare Skin Disease
Building foundational understanding of end-users and complex disease space
Design Research | Personas + Journeys | Digital Engagement
Our team was tasked with better understanding the opportunity space for digital health tools in the rare skin disease space. In particular, we set out to understand the root causes of a significant delay in diagnosis of the disease — up to 15 years for some patients. What interventions could our client potentially create to alleviate this burden, and how could we ensure these interventions would have the greatest impact?
Role: Experience Designer/Researcher
Team: Consulting, Market Research
Methods: Interviews, Image Association, Persona Development, Journey Development, SME Ideation Sessions, Concept Validation
Interviews and Personas
My team developed a research protocol and worked with market research teams to interview 62 patients and healthcare providers (HCPs) from 5 countries in North America and the EU. Interviews were open-ended and ethnographic, relying primarily on oral history from participants. We also developed image-association prompts to help participants describe difficult-to-articulate concepts like frustration and pain. Participants also did a rapid ideation session where they were asked to reflect on their experience and come up with blue-sky ideas on how to solve issues they had faced in the past.
These interviews gave us insight into the complex nature of living with and treating a rare disease. When analyzed thematically, we were able to generate three persona types for each of the participant categories. These personas will serve as a guide to understanding the complexity of the user base as the client moves forward with solutions.
One of the personas we built from interviews. I contributed to the layout, selected quotes, wrote copy, and determined categories/descriptors
Patient and HCP Journey
Our client needed a clean visual representation of the information we had learned from patient and HCP interviews. I spearheaded the effort to make a map that included all the crucial elements we picked up on, focusing on the friction points between patients and HCPs, as well as each of these groups with external actors, and even the disease itself.
These friction points are the basis for further work in the space, and mark the areas in which the client could have the most impact in trying to reduce the delay in diagnosis.
This guide outlines the components of the journey map (click to expand)
Outcome
My team delivered 6 personas and an extended journey map to the client, as well as basic idea concepts (think paper plane, not Airbus). The client was able to use these deliverables to create a foundation of understanding for continued research on digital health solutions, and my team was recently asked to continue to build out the idea concepts we originally delivered. The client hopes to bring successful concepts to market by 2024.