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Guide to developing a Patient Journey

March 2024

Wednesday, March 20th, 2024 at 15.00-16.00 CET

Healthcare services are best organised if they are patient-centred and targeted to address population needs. There are different approaches and tools used to best meet the needs of local populations, through engaging and capturing patients’ needs and real-time insights using different methods such as health surveys, semi-structured interviews, focus groups and patient journeys. Once the population needs and insights have been mapped, healthcare services can use this information to design and organise services alongside other information stemming from published evidence and tools, such as care standards, clinical practice guidelines, consensus statements and care pathways.

This webinar will focus on the approach to develop Patient Journeys as a key tool for service improvement that is progressively being adopted by the European Reference Networks. Patient Journeys are an innovative approach to capture the natural history of a rare condition and the needs of patients through the day-to-day experiences and life-lens of people living with a condition. They offer a patient-driven view of a rare condition, identifying the common unmet needs to address healthcare gaps and enhance health services by concentrating on the patient’s daily life perspective.

The webinar will present the newly published ‘step-by-step’ guide to developing patient journeys and showcase the new Patient Journey Templates for ERNs.


 Time Topics Speaker
15.00 – 15.05Welcome, introductions and setting the sceneAndrea Cembrero Bonet, Patient Engagement Manager, EURORDIS
15.05 – 15.20Step-by-step guide to developing a Patient JourneyMatt Bolz-Johnson, Healthcare Advisor, EURORDIS
15.20 – 15.30ERN eUROGEN’ experienceERN eUROGEN Team
15.30 – 15.45Panel DiscussionModerator: Matt Bolz-Johnson, Healthcare Advisor, EURORDIS

– Dalia Aminoff & Kate Tyler ERN eUROGEN
– Nicole Schwarzer, ERN ERNICA
– Mary Kearney, RND-ERN
15.45 – 15.55Questions & AnswersAll
15.55 – 16.00Closing Remarks & Next StepsAndrea Cembrero Bonet, Patient Engagement Manager, EURORDIS