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Table 4 Subcategories and representative citations referring to graduation of access rights (GA)

From: Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany

Subcategory

Selection of representative citations

GA1) Opportunities to access a patient portal

“Why should I be the only one who knows what I’ve got? I don’t see any use in it. No, so my husband also looked at it [the PEPA-content].” (FEA_Pat_27)

“In my PEPA no one else is supposed to be able to do anything but the people who are entitled. So, the doctors who upload, and me. Yes, maybe only reading permission [for the son].” (FEA_Pat_30)

“I think it’s heavily dependent on the patient. For my part, I have full confidence in my parents. I would give them my login data, would tell them ‘You can look at anything’. But I could also imagine that there are other patients who would like to have access management options and be able to say ‘Yes, my parents may look in here and there if necessary. But, I don’t know, my gynecological findings are none of their business.” (Patient statement in Interview with PRE_C_16)

GA2) Full access for caregivers

“Everything! Because in my opinion, who can look into that file is a person of trust. [...] So that’s how I would do it, I wouldn’t say ‘Well, no! This content is restricted and that is restricted!’ But either I do trust in someone and he can look into the PEPA or I don’t and he cannot [...] look into it.” (PRE_C_4)

“It’s like this, you have to imagine, my mother doesn’t even read the doctor’s letters. […] She doesn’t really want to know everything [...] and in fact I do want to know everything. [...] I also have a care directive, so if anything should happen, I have access everywhere [...]. [...] Someone has to know.” (PRE_C_1)

GA3) Question of trust

“I wouldn’t consider it useful if I had other permissions. Because, do I need someone, if I don’t trust him and give him the same permissions. That should be the person I really trust the most. Who really has insight.” (PRE_C_17)

GA4) Patients’ privacy

“I think everyone is entitled to privacy – also in the family. And that should be respected and that means – yes – […] If he would manage it himself and say, ‘You have nothing to do with it’, then I would respect that. But then he has to do it with all the consequences.” (PRE_C_15)