Table 5 Healthcare professionals’ attitude towards patients

Patients want to know

[A] [translation] “Patient information is the most important. Patients need information in order to be able to consent or refuse. Information should be in a language they could understand.”

[M”] “We have asked the physicians and the patients what they thought about that, and they were saying: well I am not against but I want to be informed, I want to be informed preferably by my family physician, by my GP and I want to know what is going on, but I am not opponent to this type of research, but I would like to know.”

Patient information is not systematic

[Sub-group M”] “We have a formal agreement [from the federal commission for professional secrecy] that the data can be transmitted to us. They are anonymous, and the patients don’t know.”

Not much value assigned to patient’s capacity to understand

[Sub-group M’] [translation] “Well, for me it is important to inform patients …yes the patients, even if they usually don’t care about it.”

[A] [translation] [interviewer’s question about the perception of patient’s position] “The patient? it is eight million of citizens, and each of them have their head, their morality, their feelings, their perception of the reality… There is no patient lambda …If I had to answer your question, I would say that a patient lambda in Switzerland has no idea about what you are asking- It is a level of mental abstraction that is present in less than 1% of the population.”

Patient information is a moral duty

[Sub-group M’] “We do not need [an informed consent] because we, basically we collect data which is collected anyway, so you could argue the patient doesn’t really care, but he needs to know what it’s done, you know.”

Patient information is useful to maintain trust

[Sub-group M’] “A well informed patient is convinced that he can really trust how his data is handled, about security of the data. He will be more willing to say yes; I agree that my data will be put into this database.”

Patients have the capacity to contribute actively

[Sub-group M”] “We also plan to have a, in a second line, a patient self-registry, so that the patients themselves can register themselves into the registry. So, there is two ways to go in. So, either for the doctor, physician, or then for the patient himself: I have this rare disease, I want to be part of this registry.”