Roberta Project: Designing Data Trusts for Maternal Health & Wellbeing
Research type
Research Study
Full title
A Data Trust Blueprint for Greater Community Involvement and Engagement in Health: Pilot Study - Using Community-Based Health Data to Help Improve Recurrent Pregnancy Loss (RPL) Support
IRAS ID
363458
Contact name
Adriane Chapman
Contact email
Sponsor organisation
University Hospital Southampton NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
More people are using digital health technologies in their daily lives — from wearables such as fitness trackers to wellbeing apps, personal logs and digital diaries. These digital health technologies are a growing source of health information. Such health information has the potential to be used in multiple ways for social good, including for individual care and well-being, for public health promotion, for services planning and improvement, and for research and innovation. The Roberta project is focusing on how to gather, manage and protect this health information for maternal health. The Roberta project is exploring whether a legal structure called a data trust can be used to look after health information generated by people through their use of digital health technologies and facilitate the responsible use of such information for social good. This research will help to identify how to create a data trust for maternal health.
The aim of this qualitative study is to co-design 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 data trust is imagined as a way for people affected by recurrent pregnancy loss to voluntarily contribute data they generate in daily life, not only to support others through research, innovation and policy change, but to ensure their data is handled with care, transparency, and consent.
To do this, 25 study participants — recruited through the Recurrent Pregnancy Loss Clinic at University Hospital Southampton NHS Foundation Trust — will be asked to attend a series of four workshops (semi-structured focus groups). A key objective being to gain insight into the acceptability, feasibility and suitability of this health information sharing approach. The “blueprint for a data trust” created as part of these workshops will be used to guide the project’s development.
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
25/NW/0369
Date of REC Opinion
22 Jan 2026
REC opinion
Further Information Favourable Opinion