As the scale and complexity of health research data increases, so too do questions around information governance and how to protect and promote the interests of research participants. Globally, there is growing interest in the role of data intermediaries—such as data trusts—as mechanisms for enabling more participatory approaches to data governance and facilitating access to emerging data sources, including data from wearables and smartphones. These developments are also relevant to ongoing discussions about the limitations of more traditional broad consent models, particularly considering increasingly blurred boundaries between the public and private sector and uses of health data for a range of primary and secondary purposes.
This oral presentation describes key findings from the Born in Scotland Data Trust (BIS DT) pilot—an interdisciplinary project funded by the Data Trusts Initiative (2021-2025) to translate the concept of a data trust from theory to practice using the Born in Scotland in the 2020s pilot project as a case study. These include:
Reflecting on our empirical and socio-legal research, the presentation will highlight some of the opportunities and complexities of operationalising data trusts in health research and will conclude with key normative and practical considerations for future development in this context.