Second step: interviewing the experts

In the second step of the method we visit the centre(s) of expertise with a panel of patients and interview the experts about their organisation of care. At the end of the first step we decided which centre or centres of expertise we will visit. If there are more centres of expertise, we will visit them all.
 

Panel of patients
For every visit we gather a specific panel of patients, consisting of:

• 3 or 4 (family members of) patients with the concerned rare disease; they are experts by experience.
• 1 (family member of a) patient with another rare disease; so the organisation of care for different rare diseases can be compared
• 1 representative of the concerned patient organisation; he or she will lead the interview.
• 1 representative of the project

Questionnaire
There is a standard questionnaire for this step, which will be adapted for every rare disease. In this process we involve representatives of the concerned patient organisation and the panel of patients. The questionnaire is based on the ten topics of the knowledge map:

1. Prevalence of the disease
2. Specialised diagnosis
3. Multidisciplinary approach
4. Attainability/accessibility
5. Management of daily care
6. Transition of care towards adulthood
7. Education
8. Scientific research
9. Registration
10. Collaboration with patients organisations