First step: online survey
An online survey among patients (members of the concerned patient organisation) is the first step to develop a knowledge map. With the online survey we gather the experiences, needs and wishes of patients.
We ask questions like where patients get their treatment, who they mention as the expert for their rare disease, the time between the first symptoms and the final diagnosis. Also we ask which other healthcare workers they visit/ see, how they think about the knowledge of caregivers, which problems they face, etc.
Click here for the questionnaire.
Results of the online survey
The results of the online survey will be analysed. With this information we know which hospital or hospitals patients consider to be centre of expertise. Together with the concerned patient organisation we decide which centre or centres of expertise will be visited in the second step.
The concerned patient organisation is also asked for their vision about the organisation of care. They can mention what they think is important for the organisation of care. A questionnaire was set up to summarize their vision about the ten topics of the knowledge maps.