Data Trust Pilots unveiled!

The Data Trusts Initiative is pleased to introduce our first cohort of data trust pioneers who will be leading the creation of real-world data trusts in 2022.

By putting citizen voices at the heart of decisions about data use, data trusts offer a vehicle for communities to set the terms of data use. For the last year, the Data Trusts Initiative 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 in practice. We’re delighted today to be announcing the next phase of our work, which will support two new 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 (charlick+nicholson architects), this pilot project will seek the community’s views on how data could facilitate placemaking and address environmental stewardship, health, wellbeing and net-zero ambitions. The pilot will support collective decision-making about how to deploy local data resources to deliver benefits for the community.

‘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.’ (Natasha Nicholson, Brixham Data Trust)

You can find out more about the Brixham data trust pilot here.

The Born in Scotland Data Trust, led by Jessica Bell (University of Warwick), Rebecca Reynolds (University of Edinburgh) and Ann Hagell (The Association for Young People’s Health) 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. 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 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, Born in Scotland Data Trust).

The General Practice Data Trust will be investigating how data trusts could help steward healthcare data in the UK. Building on recent work as part of the Civic Data Identity Platform project, Dr Sarah Devaney (University of Manchester) and the Team will be building a data trust that brings bottom-up data stewardship to NHS data.

The GP Data Trust pilot aims to explore how to give back control of their data to over a million people who have opted out of NHS Digital’s General Practice concerned about how their data will be managed and used by the NHS (GPDPR) programme, and enable them an opportunity to participate in life-saving research.

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, our ambition 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 the 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 taken us 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. We are grateful to the McGovern Foundation in particular for giving us the means to turn this idea into reality.

You can find out more about the Born in Scotland data trust pilot here