Why ‘Expertise mapped’

‘Expertise mapped’ has been developed because of the problems patients with rare diseases face, to identify where the expertise for their disease is located. Furthermore there are European developments, which make it even more crucial for patients to be informed about centres of expertise.
 

What problems do people with rare diseases face?
From the start of symptoms of what is later diagnosed as a rare disease, patients  enter a maze of different healthcare professionals. Common challenges are:

• a late diagnosis
• a lack of knowledge among specialists and healthcare workers
• a lack of effective treatments
• a lack of available information about their rare disease
• insufficient attention to scientific research

‘Rare’ diseases
A disease is called ‘rare’ when it  occurs in less than 1 in 2.000 of the population. There are estimated 5.000-8.000 different rare diseases that together affect 6-8% of the European population.  Because of the quantity of rare diseases, not everyone can have expertise for every rare disease.

Cluster expertise: centres of expertise and ERNs
To provide proper care, it is important to cluster expertise for rare diseases. This insight has led to different European developments, like the formation of centres of expertise and the establishment of European Reference Networks (ERNs).
 

ERNs
In the ERNs experts from different European countries collaborate (cross-border healthcare) to improve a quick diagnosis and access to high-quality healthcare for patients with rare diseases. To establish ERNs, countries in the European Union have to designate centres of expertise.
 

Centres of expertise
A centre of expertise is a hospital where patients from all over the country get diagnosis and treatment. Doctors and researchers gain a better understanding of the disease and the treatment, due to the relatively large number of patients with a specific rare disease that visit  the hospital and the scientific research that can be done for that group. The European Union Committee of Experts on Rare Diseases (EUCERD) has published  criteria for centres of rare diseases.

In the process of identifying and designating expertise in rare diseases at national level, hospitals and healthcare workers generally indicate their expertise. The perception of patients is often not incorporated, while they are experts by experience and therefore should be involved in this process. In The Netherlands patient organisations are asked to give their opinion about the hospitals which claim to be centre of expertise.
 

The role of ‘Expertise mapped’
With ‘Expertise mapped’ we offer patient organisations an overview of  the experience of patients with centres of expertise  in combination with the information we get from the professionals. We do not rate centres or provide ‘customer satisfaction’ data , but we pull information together, so patients and patient organisations can form an opinion about centres of expertise and the organisation of care.