Experiences of experts
Experience: “It was a very structured interview. The knowledge maps clearly shows patients the outline of healthcare in centres of expertise. ”
Who: Marc Engelen, pediatric neurologist, AMC Amsterdam
Participated in: Knowledge map for X-linked Adrenoleukodystrophy (X-ALD)
Experience: “We had a very interesting and informative conversation with the patients. Feedback from patients, who are experts by experience, is very important to improve our patient care. The knowledge map also gives us the opportunity to show our knowledge.”
Who: Team of experts for Pulmonary Fibrosis, Erasmus MC Rotterdam
Participated in: Knowledge map for Pulmonary Fibrosis
Experience: “We can only improve our healthcare system for rare diseases when we collaborate with patients. The development of knowledge maps is an unique project, which shows opportunities for improvement.”
Who: Frits Wijburg, professor Metabolic Diseases, AMC Amsterdam
Participated in: Knowledge map for Lysosomal Storage Diseases
Experience: “The development of knowledge maps is a clear example of partnership between patients and experts. It was an inspiring, dynamic and informative process. With the knowledge map we can show our expertise for rare kidney diseases. I think that excellent patient care is impossible without participation of patients!”
Who: Jacqueline Knoll, nurse practitioner, Radboudumc Nijmegen
Participated in: Knowledge map for Atypical Hemolytic-uremic Syndrome (aHUS)