Global Rare Disease Patient Journey Framework

Context

During my time at Experientia Global, I worked on a large-scale patient experience initiative for Takeda’s Global Patient Services organization, focusing on rare diseases.

Across multiple therapeutic areas, the organization was running patient journey initiatives in different regions. However, these projects lacked a consistent structure and shared methodology, making it difficult to compare insights, align global teams and scale successful interventions.

The objective was to develop a standardized patient journey framework that could be applied globally while supporting local innovation and service development.

Over the course of the initiative, the framework was applied across 17 patient journey projects spanning more than three years.

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My Role

Service Designer, Researcher & Workshop Facilitator

I was part of the core team responsible for developing and applying the patient journey methodology, supporting research activities, facilitating workshops and translating insights into structured patient journey maps and service concepts.

The work required close collaboration with global patient service teams, medical experts and local market organizations.

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Approach

The project followed a global-to-local service design approach.

We combined centralized research and framework development with local validation and service design workshops.

Key elements included:

• ethnographic research and patient interviews
• mapping complex rare disease patient journeys across treatment stages
• identifying patient emotions, needs and critical moments of support
• developing a standardized journey mapping toolkit
• facilitating cross-functional workshops with global and local teams
• translating insights into service interventions and innovation opportunities
  

The framework enabled teams across the organization to speak a common language when designing patient support services.

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Key Contributions

• Contributed to the development of a global patient journey mapping toolkit
• Supported the delivery of 17 patient journey projects across rare disease areas
• Conducted and synthesized qualitative patient research and interviews
• Structured patient journeys around behaviors, emotions and support needs
• Facilitated co-creation workshops with cross-functional teams
• Translated insights into service innovation opportunities and intervention concepts

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Impact

The initiative created a coherent patient experience framework across Takeda’s patient services organization.

Key outcomes included:

• Standardized patient journey methodology used across multiple therapeutic areas
• Improved alignment between global strategy and local market initiatives
• Identification of new patient support services and communication strategies
• Consolidation of patient insights into a shared organizational reference
  

Across the program, the work incorporated:

• 17 patient journey projects
• 1000+ patient and stakeholder interactions
• 100+ cross-functional participants in workshops and validation sessions
  

The framework became an important foundation for future patient support initiatives and service innovation.

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