SITUATION

Conversations among family members are crucial for the early diagnosis and treatment of ultra-rare diseases. Removing the taboo around these conversations, encouraging family members to be part of the conversation around diagnosis and ensuring effective disease management to slow progression are key milestones in the patient treatment journey.

APPROACH

We worked closely with the patient community to understand what stands in the way of these conversations, as well as co-create and optimise the solution.

Research included:

• Qualitative research, combined with behavioural analysis, to understand what behaviour needs to change and how to change it
• In-person co-creation with patient group representatives across Europe to co-create the programme and define its scope and materials
• Online community to feedback on three prototype identities (visuals, tone of voice, language) and input in the materials we proposed (website, leaflets etc) (online community)
• Online survey to feedback on the final designed materials and content.

OUTCOMES

A patient support programme aimed at empowering patients to have conversations with family members and encourage them to see a healthcare professional for assessment, including behavioural interventions such as:

• Information on the disease – what it is and how it is inherited
• Conversation planner
• Checklists to ensure they feel confident to speak with their families
• Assets included website, leaflets, patient videos and interactive conversation planner.