The Roberta Project: Designing Data Trusts for Maternal Health and Wellbeing

How can we empower communities to take control of their own health data in a way that is ethical, inclusive, and impactful?

The Roberta Project, part of the Southampton Biomedical Research Centre’s Data, Health and Society theme and supported by the Web Science Institute , is tackling this question head-on, by exploring the idea of data trusts for maternal health. At its heart, the Roberta Project is about co-design. It invites people who have experienced pregnancy loss to help shape a new kind of data governance – one that centres their voices, values, and experiences.

The project, led by Professor Michael Boniface , Professor Age Chapman and Professor Dame Wendy Hall , focuses on a growing source of health information: community-based data. This includes everything from fitness trackers and wellbeing apps to personal logs and digital diaries. Although this data is increasingly generated by individuals, more can be done to support its use in meaningful ways to improve care or support research.

The Roberta Project sets out to change that by designing a blueprint for a ‘data trust’ - a framework for individuals and communities to decide how their data should be managed, shared, and used. In this case, the trust is imagined as a way for people affected by pregnancy loss to voluntarily contribute data they generate in daily life, not only to support others through research and policy change, but to ensure their data is handled with care, transparency, and consent. The project is undertaking a series of codesign workshops involving people with lived experience, clinicians, community groups, policy makers, and legal experts. Participants explore scenarios using a fictional character, Roberta, who navigates pregnancy after loss using digital health tools. Through these sessions, participants discuss the realities of using and sharing personal health data, the risks and benefits of data donation, and how a data trust might protect their interests while enabling social good.

Digital health tools are a growing part of people’s lives, but they aren’t always designed with empathy. Some commercial apps fail to account for pregnancy loss, often continuing to send notifications after a miscarriage. Roberta’s story helps participants surface these challenges and reimagine what respectful, inclusive digital health design might look like. Beyond design, the project is also building practical pathways for implementation. It draws on legal models such as the Digital Jersey Data Trust, applying this to maternal health in the UK context.

The Roberta Project connects cutting-edge legal, technical and social insights to explore how data trusts can be piloted in real-world health settings. By creating a space where affected communities co-design how their data is used, the Roberta Project represents a powerful model for participatory data governance. It blends web science, public health, and ethical technology design, championing data stewardship that is not only trustworthy but deeply human.