ÌÇÐÄTV

Data Trusts: Lessons Learned and Future Directions. 31st May 2023, Scarman House, University of ÌÇÐÄTV.

In this multi-disciplinary Symposium funded by the Data Trusts Initiative and hosted by the University of ÌÇÐÄTV, representatives of the Data Trust Initiative and the pilot data trust initiative projects, interested and expert academic researchers, policymakers, not-for-profit organisations and legal practitioners were invited to consider the question of the lessons learned and future directions of the data trust pilot projects. While the discussion considered issues of relevance to all data trusts, the focus of the day was on the examples of data trusts in the context of health data.

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‘Our Planet, Our Health and Our Future’

The BIS Data Trust will host a stall at The University of Edinburgh COP27 public engagement event ‘Our Planet, Our Health and Our Future’ held at Dynamic Earth. In this ‘conversation fair’, we will be asking the public their views on how their data can be used to support research into the effects of climate change on health.

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Focus Group

We want to know more about public perceptions of the model and how it could look in the future. Through our empirical work we are investigating what the concept of a data trust means to individuals, what individuals would like a data trust to be able to achieve, and whether they have an interest in a model like the data trust for the future of health research.

We are holding a focus group in Edinburgh with BIS participants to understand their views about how their health data – and their children’s health data – are used and governed. We aim to be able take these learnings to co-develop a pilot data trust with BIS participants in a ‘bottom-up’ manner.