Exploring the concept of a data trust in the health research context: suitability, desirability and considerations for translation of theory into practice
How can legal mechanisms associated with data trusts enhance participation in healthcare research?
Bringing together insights from law, healthcare and research governance, this project is exploring how data trusts could be operationalised as a governance model for longitudinal health studies. The project analyses legal concepts associated with data trusts in this context, such as the scope and implications of fiduciary duties, and mechanisms for increased engagement and participation in healthcare research. In collaboration with a birth cohort study, one area of focus will be the role and engagement of children enrolled in longitudinal research studies, and how data trusts might be used to give these research participants a voice in decisions about data use.
Project lead: Dr Jessica Bell, University of Warwick, in collaboration with Professor Melissa Wake, University of Melbourne