There are over 7000 rare diseases in the world that do not have a cure. Lots of these diseases are represented by disparate patient groups with varying degrees of technical expertise and access to new information and clinical research.
Is there an opportunity to create a space where people who are affected by these rare diseases, as well as their relatives and carers, can find information and share their experiences? All with the ultimate aim of increasing the likelihood of successful clinical trials though critical mass.
Myself, a technical architect and data scientist set out over six weeks to explore the high-level business idea in more detail. Through sketching and prototyping, to fuel early testing and validation with potential users, we helped set out a blueprint for what the v1 service could look like.
The results of one-to-one qualitative research drove our early prototypes. These were tested and iterated with leaders of patient groups across two rare diseases. Coupled with research into the volume of medical literature available through services such as PubMed, we started to understand the scope of the solution.
At times a challenging project due to the sensitivity of the talking points in the research interviews. Our six week spike culminated with a presentation to the steering group of stakeholders, laying out our recommendations for product team composition, technical approach and patient experience. The service launched in beta 6 months later.
Early flow diagrams and process sketches
Part of an end-to-end prototype that was tested with patient group leaders