Duchenne Parent Project

To answer this question, we first examined whether the needs of the target audience aligned with the functionalities of the platform. We did this by conducting eight semi-structured in-depth interviews with Duchenne families.

It emerged from this that data and information about the disease are quite fragmented. Medical data is primarily held by doctors, hospitals, and the Duchenne Parent Project, while practical information can be found in the Facebook group. Another conclusion is that people are willing to participate in research, but only if its value is clear. Contrary to the client's expectations, Duchenne families expressed a desire to look ahead to the next phases and see how they are doing in comparison to others.

In an extensive brainstorming session, we devised how to translate these insights into concrete solutions. For example, providing links to the data platform to answer questions in the Facebook group. Another solution is to immediately show people why a section they have completed is relevant to them. By making predictions based on the data provided, Duchenne families have a better understanding of what to expect. These solutions enhance engagement, and the Duchenne Parent Project is now implementing them step by step.