During iPrognosis’ latest consortium meeting at the end of March in London, partners had the opportunity to sit down with volunteers of the iPrognosis’ studies, to hear their feedback and respond to their questions about the project. Participants consisted of patients diagnosed with Parkinson’s disease, as well as healthy volunteers that are participating in both the GData (=using the iPrognosis app) and the SData (=medical examination + optional smartwatch) studies.
Overall, participants reported that the iPrognosis app does not alter their behaviours and they even forget that it’s running in the background. One participant, however, reported that she does consider it intrusive to have her voice monitored and the mood of her messages analysed – in that sense the app does alter her behaviour. The aspect of being so scrutinised has prevented friends and family from joining the GData study. Leontios Hadjileontiadis, Project Coordinator, responded by emphasizing that iPrognosis is an EU funded project, bound by the General Data Protection Regulation and all the analysis is done on the phone, no recordings are sent to the cloud. Furthermore, the analysis is not of what is being said or typed but of how e.g. how much time do you press a key, not what do you type. Having these technical specificities explained, was considered very helpful by all participants. One suggestion to inform themselves about the technical specificities may also be to read the consent form of the app, already containing all this information. Downloading and consenting to the app’s use are two separate steps.
None of the participants had used smartwatches before and acceptance of the smartwatch differed widely. Contrary to the app that integrates seamlessly into their daily lives, participants agreed that the watch does alter their behaviour.
All participants have experienced minor technical problems with the watch, from freezing to not uploading activities.
Before being presented with the serious games developed within iPrognosis, participants were also asked if they liked to play electronic games – most respondents did not show a particular interest.
Having gathered all the participants’ insights, the consortium also raised the question on how they would feel about getting feedback from the app, for example through visuals – all participants concurred that they would appreciate feedback.