Submitted by Rachel Gardner on Tue, 15/03/2022 - 15:50
A small fishing town in Devon, and a Scottish project supporting health data research into pregnancy and childhood development, have been unveiled as pilot data trusts.
Data trusts offer a vehicle for communities to set the terms of data use by putting citizen voices at the heart of decisions about how their data is used. Over the last year, the Data Trusts Initiative (hosted here in this Department) has been investigating how to move the debate about data trusts from theory to practice.
Most of today’s questions about what exactly a data trust is, or how data trusts work, can only be resolved by trialling data trusts methods. So this week, the Data Trusts Initiative has unveiled two data trust pilot projects.
The Brixham Data Trust seeks to empower the community of the small fishing town of Brixham, Devon UK, to exercise their data rights. Led by Natasha Nicholson and Pamela Charlick (from charlick+nicholson architects), this pilot project will support collective decision-making about how to deploy local data resources to deliver benefits for the community. It will seek the community’s views on how data could facilitate placemaking and address environmental stewardship, health, wellbeing and net zero ambitions.
We believe data trusts can have the potential to help support crucial health data research into pregnancy and childhood development, while at the same time providing enhanced participation and more robust safeguards for data and data rights.
Jessica Bell
"Our ambition is that this data trust pilot lays the foundation for a new data ecosystem in Brixham, building the community’s capacity to use and share data securely in ways that benefit local people and organisations," says Natasha Nicholson.
The Born in Scotland Data Trust will build an infrastructure for trustworthy data stewardship around a pilot birth cohort study that ultimately seeks to tackle the economic and healthcare inequalities affecting communities in Scotland. It is led by Jessica Bell (University of Warwick), with Rebecca Reynolds (University of Edinburgh) and Ann Hagell (The Association for Young People’s Health).
Stewarding healthcare, administrative and social data collected from pregnant women and their children, this pilot project will explore how data trusts can give research participants, including young people, a voice in decisions about data use.
"We believe data trusts can have the potential to help support crucial health data research into pregnancy and childhood development, while at the same time providing enhanced participation and more robust safeguards for data and data rights," says Jessica Bell.
This inaugural cohort of data trust pilot projects will take the first steps towards delivering data trusts that transform patterns of data use, creating a new model of bottom-up data stewardship that empowers individuals and communities.
In the long-term, the ambition of the Data Trusts Initiative is that these pilots help deliver the economic and social benefits of data use while more effectively managing the harms or vulnerabilities that new uses of data can create.
The Data Trusts Initiative will be working in partnership with these two pilots to develop advice, workshops and practitioner networks that help navigate the operational challenges faced by those seeking to establish data trusts.
The launch of these inaugural pilots marks a significant step in a project that has progressed from theory to real-world deployment in three fast-paced years.
This rapid progression wouldn’t have been possible without the support and advice of a variety of private, public and not-for-profit actors who chose to champion the idea of data trusts early on. The Data Trusts Initiative is grateful to the McGovern Foundation in particular for supplying the means to turn this idea into reality.
