Table 7 Selective coding and frequency for enabling conditions

1. Experience (frequency 84/1357 codes)

Previous experience connecting with other patients; Not only from my doctor: I communicate with specialists abroad for my child’s needs; Experience with national networking platforms abroad; Lived experience with rare diseases/ERN collaboration abroad; Access but no real collaboration with ERNs up to now; Each patient case is different – Misinformation; Used to phone and email for my communications but this is not multidisciplinary collaboration; Experience with national networking platforms abroad (configuration of tools); Reading vs. contributing culture

2. Lack of “hedonic pleasure”/disease-related conditions (frequency 44/1357 codes)

Psychological burden from negative aspects of disease; “We don’t want to talk about the disease all the time”; “If I had something I would know by now”; People usually come when they need something/ they are facing an emergency with regards to treatment / financial support

3. Indicating external to the technology variables determining their user behavior (Policies) (frequency 94/1357 codes)

No departments/centres of expertise and patient pathways; Need for nationally-accredited diagnostic labs; Need telemedicine for follow ups in collaboration; Reimbursement of shared care; Unsure about legal aspects for sharing scientific information from networks

4. Indicating inherent and external to the technology variables determining their user behavior (infrastructure) (frequency 95/1357 codes)

Difficult to create multidisciplinary teams because there is not enough expertise; Need basic supportive hospital structures to be able to participate: Not enough specialised staff for multidisciplinary teams leads clinician’s extended role; Need strong patient support groups