Digital technologies have greatly expanded the collection, accessibility and sharing of our data; including our health data. This is a trend often motivated by the promise of future improvements to healthcare — helping us to learn about ourselves, and researchers to learn about the characteristics and behaviour of populations.
Often celebrated as a revolutionary turn in the practice and study of medicine, these ambitions have in recent years led to the development of shared-access health data repositories
; enabling diverse stakeholders to more easily leverage data from disparate sources and in turn to overcome common challenges in the recruitment of research study participants. This large scale sharing and resharing of data has equally raised questions however, as to how we must now conceive of established research ethics practices including the provision of consent. What might consent mean when it comes to the large-scale sharing and resharing of personal health data? And how might data contributors be protected from potential harms including research bias, stigmatisation, social discrimination, commercial manipulation or even authoritarian governmental control?
The work of Giovanna Vilaza's PhD thesis took on these very questions with the aim of supporting the development of increasingly responsible, ethical and contributor-centred health data ecologies. Through literature review, interviews, workshops and surveys conducted with international health data repository contributors and developers, in addition to the critical appraisal of diverse technologies and prototyping of new user interfaces, Giovanna's work contributes both evidence and a portfolio of methods to support a more contributor-centred health data technology design practice.
Read more about Giovanna's work here