Experiences of patient organisations

lida verkleind def

Experience: “Because of ‘Expertise mapped’ we had to adopt a vision, as a patient organisation, on the expertise we need from healthcare professionals. We also used this vision for our new information materials. With the knowledge maps we now have a complete overview on healthcare for patients. The interviews with the centres of expertise also strengthens our collaboration with the centres of expertise. A win-win situation!”

Who: Lida Naber, project coordinator Patient Organisation for Pulmonary Fibrosis

Participated in: Knowledge maps for Pulmonary Fibrosis and Pulmonary Hypertension (PH)

Anne Kors-Walraven def

Experience: “The phospholamban gene mutation (PLN) is recently discovered. Thanks to ‘Expertise mapped’ we could create an overview of the available expertise, very fast and easy. What I really like about ‘Expertise mapped’ is that it visualises the perception of patients as well as the perception of healthcare professionals. We hope many patients will use the knowledge maps.”

Who: Anne Kors-Walraven, policy advisor De Hart&Vaatgroep

Participated in: Knowledge maps for the Phospholamban gene mutation (PLN)

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