On Tuesday 17 May, Giovanna N. Vilaza will defend her PhD thesis " Designing Respectful Health Data Flows Centred on Data Contributors' Perspectives".
Time: 14:00
Place: Building 341, auditorium 22 &
zoom: https://dtudk.zoom.us/meeting/register/u5Mpf-utpjMrHt0I2CatzlEboX2IRiqA8Fqz
Please be aware that the PhD defence may be recorded - This will also be informed at the beginning of the PhD defence.
Supervisor: Jakob E. Bardram
Co-Supervisor: Kevin Doherty
Assessment committee:
Professor Maja Horst, DTU Management
Associate Professor Katie Shilton, University of Maryland
Professor Louise Barkhuus, The IT University of Copenhagen
Chairperson:
Professor emeritus Henning Boje Andersen, DTU Management
Abstract:
Digital patient information has opened up opportunities to automate diagnosis, personalize treatments and optimise costs - a revolutionary turn to the practice and study of medicine. Largescale data repositories, like the Danish National Patient Register, were created to facilitate the access to patient information by researchers, clinicians and public workers. Despite the possible advantages, the idea of storing and sharing citizens' affective states, physiological changes, and daily habits can bring worrying risks, such as social discrimination, undesirable exposures, threats to freedom and hidden profiting. In this PhD project, we investigated how technology design can prioritise the expectations, preferences and needs of people asked to disclose their personal data. We found that citizens desire stronger data control, more transparency and a fairer distribution of benefits. These insights serve as concrete evidence of a much-needed change in the design of current health data systems. Overall, this PhD contributes to a critical alternative vision for 'datafied health' motivated by profound respect for ethical principles and urgent citizens' concerns.