Experience: “The knowledge map is very important to me, because it shows that patients can compare options for their treatment when there is more than one centre of expertise. In the interviews there was mutual respect, insight and understanding between experts and patients. With this tool patients not only have a voice in the knowledge maps, but also in the organisation of healthcare.”
Who: Kees Diemel, member of the Dutch Patient Organisation of Crohn Disease and Ulcerative Colitis
Participated in: Knowledge maps for Short Bowel Syndrome, but he also participated in interviews with experts for several other rare diseases.