OBJECTIVES: Introducing innovative therapies and technologies into effective clinical practice requires deep insights of the existing landscape. Analyzing how patients navigate in their local healthcare system is critical to identifying opportunities and limitations of the existing standard of care and redesigning a care pathway where the integration of the new medicinal product/technology delivers superior outcomes. This process is extremely challenging in rare diseases and small countries, where patient and physician numbers are low, to identify common patterns. A structured multi-country innovative approach was developed to facilitate that process.

METHODS: Three small-midsized European countries developed a European Patient Journey Map for a Rare Disease through a structured step-by-step approach, using an online team collaboration software (MIRO) as repository to collect and synthesize multi-country insights with patients and physicians, identifying similarities and differences among participating countries.

RESULTS: All available internal and external international patient research data was integrated into a MIRO board. The initial insights and identified gaps were enriched with a patient and physician research plan. The patient journey was discussed with patients and physicians to validate the existing information locally and identify remaining gaps. This was done in an agile (utilizing agile scrum methodology) and real-time manner. The MIRO board was used to synthesize results, on both country and regional level.

CONCLUSIONS: The structured approach and the process provided flexibility and agility in gaining quick & real-time insights and allowed multiple countries to localize the patient journey simultaneously. The tool captured rich insights from different stakeholders, used to strategize early pre-launch activities for rare diseases in small-midsized countries. The process can be used in additional countries to further enrich the insights and develop the current tool.