A “Patient Journey” is a personal testimony that reflects the clinical pathway and needs of patients for a specific disease, showing in a comprehensive way the goals that are recognized by both patients and clinical experts.

This is an ERN-EURORDIS initiative developed to promote more meaningful patient involvement, highlighting the influential role of ePAGs inside and outside the network. The objectives of this project are to generate discussion within the patient community, see how networks can address the unmet patient needs, and ensure that discussions are structured and patient-centered. This will be useful for patients to not only represent their own needs, but also raise awareness about ERNs and disseminate information within their community. 

ePAG advocates first map out their clinical presentation and needs, both medical and psychological, at each stage of the care pathway – first symptoms, diagnosis, treatment, follow up – and indicate what would have been ideal in terms of outcome at that stage. This is followed by structured dialogue between the patient and clinician wherein ERN-LUNG healthcare professionals review and validate the clinical presentation, identify unmet needs and prioritize them, identify patients’ preferences and opinions to the risks and benefits of care and treatment options, and identify scope for the development of guidelines. 

The journey can be used by both patients and clinical experts to explain the clinical pathway: professional experts can explain to newly identified patients how the clinical pathway generally looks like, while their patients can identify their specific needs within these pathways.

Patient Journeys for the following diseases covered by ERN-LUNG are available: