In this project, we have partnered with Born in Scotland (BIS)Link opens in a new window at the University of Edinburgh, the Association for Young People’s HealthLink opens in a new window, and the Data Trust InitiativeLink opens in a new window, to explore a new model of data governance called a ‘Data Trust’ and investigate how the ideas behind data trusts can be put into practice.
Different governance models can be used to support health research and birth cohort studies. Health research projects are generally set up and managed by a public institution like a university or hospital, established as a separate legal entity like a charity or for-profit company, or created by a specific piece of law. In these projects, broad consent is typically provided on an opt-in basis at the beginning of a health research project, and participants have the right to withdraw should they change their mind about taking part. We’re interested in how we might move towards more participatory governance models, in which individuals and communities are empowered to be more engaged and involved in decisions about how their data is used.
Our project explores whether a data trust and the legal mechanisms associated with a trust law model might be a helpful vehicle to do so, and 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. Analysing the conceptual underpinnings of the trust model in the health research context, and the potential opportunities and challenges in its operation, is an important next step to evaluating the potential of data trusts in practice. Bringing together insights from law, healthcare and research governance, we aim to build a pilot data trust that could provide a framework for future data trusts in the health research arena.