Patient journeys are a way to improve care by patient involvement.

The relationship between a patient and a healthcare provider has changed over the last decade enormously. In the area of rare diseases, often the patient knows more about their condition than the doctor who is treating them, and this is precisely not what the patient is looking for.

Patients, and their families, have to deal with a lot of challenges during their healthcare journey. This starts with the medical diagnosis, treatment, and next steps. The patient journey is marked by uncertainty, no effective medical treatments, and many unanswered questions. The reason that this journey is so difficult, is because there is little knowledge regarding rare diseases. Despite there being approximately 7000 rare diseases identified worldwide, medical professionals may only see a few patients with a rare disease during their entire career.

The Patient Journey collects the common needs of a patient by mapping their needs across the series of stages of the Patient Journey. The Patient Journey not only pays attention to the medical aspects but also to the psychological aspects. Each stage covers the clinical presentation, the patient’s challenges, needs, and their objective to improve the care. When the Patient Journey is finished this is reviewed by patients and professional experts. By using graphics, patients and healthcare providers can discuss the personal needs of a patient paying attention at the same time to the expertise of both patient and professional leads.

The objective remains: improving care for patients with a particular rare disease.

We have developed the Patient Journey for CMN in collaboration with the European Reference Network (ERN-skin).