Aim of the project

The aim of the project ‘Expertise Mapped’ is to visualise the organisation of care for patients with rare diseases, from patients’ perspective. We do this by so-called knowledge maps. They show on one hand the perceptions, needs and wishes of patients and on the other hand the competences of the centre of expertise. Our goal is to generate a large and diverse overview of the expertise for different rare diseases. This  project runs in The Netherlands at this moment, but we hope to inspire other countries to include the patients’ perspective in the organisation of care for rare diseases.
 

For patients
Knowledge maps show which hospitals  have  specific knowledge about different rare disease and how the centre of expertise organises  care and follow-up.  Through this information patients find out where expertise for their disease is located. Also patients can read the experiences of other patients and what they think is important for proper care.
 

For healthcare professionals
When  non-specialized healthcare professionals  suspect a rare disease in a patient, the knowledge maps shows  the centre(s) of expertise where they can refer their patient to. Other  healthcare workers can identify  where to address their queries about the care for patients with rare diseases.
 

For the centres of expertise
Knowledge maps give the opportunity to improve care in centres of expertise.  With the information that is mapped  about patients’ experiences and their needs and wishes, it is possible to customize care.