Table 2

Extracts on the topic of uncertainty

Extract number (E)Quotes from participants
E8Participant 3: “However, this thing concerning health insurance funds actually… ‘whom does the data belong’ is really a question that I ask myself. Whom do they belong to, since the patient has given them and they are anonymous…to whom do they belong?”
Participant 1: "They belong to the patient probably. However, the problem is that the availability of data does not depend on the patient. Because the patient does not have her own data…That’s it."
Participant 2: “Because then it is the ‘data management’—do you understand?—who takes care about them [the data]…I authorize you to process my data, but if I am then not the one who manages or processes it…” 14RItaP
E9“[A]t different conferences, meetings this [data ownership] is always a discussion point, but it doesn't come to a solution. It ends open mostly. And I think it’s, yeah… it’s difficult because you have to find out what is data. It’s not something like a cup or something you can take in your hands, it’s not material in that perspective. So can you own it or can you get only the right to process it? It’s very, very tricky.” 21HEngP
E10Participant: “I think this ‘belonging’ of data is somehow a difficult story.[…]Maybe it is legally at first sight straightforward, but on second thoughts it is—I think—more complicated.”
Interviewer: “Well, theoretically yes [it is easy] but practically not so much…”
Participant: “Yes, right? And what does it mean actually ‘they belong to me’?” 36PGerT