In this episode of our quarterly bonus series, Host Julien Poulain hands over to his colleague Nora Lazaro (EURORDIS ERN and Healthcare Patient Engagement Manager) for a discussion with Lori Renna Linton (Patient Representative in ERN RND ePAG) and Sophie Ripp (Project manager in ERN RND) on the value of patient journeys. Patient journeys are healthcare service improvement tools that capture the usual course of development of a condition, and the needs of patients living with that condition, through their day-to-day experiences. The ERN RND representatives share their experiences in creating patient journeys, disseminating them in new and innovative ways, and give practical advice on how to build resources that have the largest possible impact!

Resources mentioned:

EURORDIS Guide to developing a Patient Journey: https://www.eurordis.org/publications/guide-to-developing-patient-journey/

How the Patient Journey can improve care pathways? https://www.eurordis.org/care-pathways/ 

ERN RND patient journeys: https://www.ern-rnd.eu/disease-knowledge-hub/ern-rnd-patient-journeys/ 

ERN RND Scientific Theatre Dystonia: https://www.ern-rnd.eu/disease-knowledge-hub/dystonia/