Born In Scotland Data Trust

Understanding views about uses of health data and future models for data stewardship.

Introducing the Born in Scotland Data Trust.

Born in Scotland (BIS) is a research study that will gather information on large number of pregnancies of people living in Scotland - 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.

Creating such a valuable resource of data raises questions about how the data should be protected and managed, and who gets a say in the use of the data.

In the Born in Scotland Data Trust project, we want to test how a new, different model for looking after data - called a data trust - could work in practice, using the Born in Scotland as a case study.

The 'Born in Scotland in the 2020s' study is working in partnership with the Data Trust Initiative. A data trust is a mechanism for individuals to take the data rights that are set out in law, and pool these into an organisation - a trust - in which trustees make decisions about data use on their behalf.

The Born in Scotland Data Trust will develop an infrastructure for trustworthy data stewardship around the Born in Scotland in the 2020s pilot birth cohort study. 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.

The study is working in partnership with the University of Warwick, The Association for Young People’s Health, and the Data Trusts Initiative to understand views around uses of data for health research, and to think about new ways to give research participants, including young people, a voice in decisions about data use in projects like Born in Scotland.  

Data is vital for health research, and there are lots of different models that are used to support the ways in which health data like information held by your GP about your blood pressure, ultrasound scans, or samples of salvia or urine, are used in an ethically and legally appropriate way. For example, health research projects may be set up and managed by a public institution like a university or hospital, established as a separate legal entity like a charity or for-profit company, or created by a specific piece of law. You might be asked for your consent to be part of the project only once at the very beginning, or you might like to be asked more often about your preferences as the project continues.

If you have any questions, please contact Dr Jessica Bell at:  

Warwick University Born in Scotland Data Trust website