Born in Scotland Data Trust

Exploring a new model of data governance with the potential to put individuals and communities at the heart of decisions about how their data are used.

Project Overview

In the digital era, a growing range of daily activities are facilitated by digital technologies, and the volume and variety of data available is greater than ever before. This ‘digital revolution’ offers potential benefits for individuals, communities, and society. In the field of health, new technologies like wearable fitness trackers and continuous glucose monitors collect and analyse new categories of data that could be used to improve health outcomes in the future. But how we govern data in a trustworthy manner and support data use for societal benefit is an ongoing question for law, policy and practice.

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. Born in Scotland (BIS) is a birth cohort study that will gather information on large number of Scottish pregnancies - and the babies born from them - during the 2020s. It will use this to answer questions about many different health issues, across pregnancy, birth, and early childhood.

Funder: Data Trusts InitiativeLink opens in a new window

Project Team

Dr Jessica BellLink opens in a new window, Principal Investigator (University of Warwick)
Chukwuemeka NwabuzorLink opens in a new window, Research Assistant (University of Warwick)
Professor Rebecca Reynolds Co-Investigator (University of Edinburgh)
Dr Ann Hagell, Co-Investigator (Association for Young People’s Health)