Table 3 Anchor examples for the “information exchange”

Professional health knowledge on rare diseases

“[...] Yes, I think that if I had the right diagnosis—if I had MS, for example, which was never really excluded—but if I had this as a diagnosis, then I could have told every physician, ‘Look, I’ve got MS.’ Then, everybody would know what that is, everybody would know what kind of constraints I have, and one would eventually show a little consideration for me.” (Patient, female, P16)

Health information scope: Between feeding fear and effective health management

“First, to protect the patient from himself, as the induced therapy wave or perhaps also false/ or diagnostic wave can also be harmful. But I also see it as a question of capacity of our health care system. That we are not able to smooth every false alarm induced by “chatrooms” through profound information coming from physicians.” (GP04)

The “expert patient”

“Especially those exchange websites. [I1: Um]. That he comes to me, and then somehow has enormous expectations and wants to tell me how it needs to be done [or not done], that’s difficult for me; but he can be right. Thus, I mean, who is the specialist for these diseases? Actually it’s the person afflicted. ‘Well, he’s got the symptoms, he knows how it was diagnosed, and he also knows what works for him.’ The real specialist on the disease is in general the sick person. When it comes to common diseases, we are also experts, because we experience them so often. When it comes to rare diseases—well, I think if the physicians were honest, they are sometimes just helpless, because, they just do not have it that often.” (Physician, female, 42 years, KA07)