Parents share pregnancy loss data to improve care

Parents who have experienced pregnancy loss are contributing data from apps and fitness trackers to help shape future support and improve maternal care services.

The initiative aims to create a new model giving families more control over how personal data — such as entries from wellbeing apps and diaries — is used to support others.

While the NHS routinely collects medical data to improve care, it rarely includes day-to-day information from people’s lives. The project seeks to change that, with safeguards for consent and transparency.

Led by researchers at the University of Southampton, the Roberta Project is being delivered through the National Institute for Health and Care Research’s Southampton Biomedical Research Centre.

Professor Age Chapman is head of the university’s digital health and biomedical engineering research group.

Chapman said: “Health-related data outside of the NHS is increasingly important for improving health and wellbeing, but how can we be sure it is being handled with care, transparency and consent?”

“The Roberta Project is about empowering communities to say where they want data to be used, so their voices and experiences can be at the very core of maternal support.”

The team plans to create a ‘data trust’ — a governance framework that gives families who have experienced early pregnancy loss a collective say in how their information is used.

Professor Dame Wendy Hall is director of the university’s Web Science Institute and lead of the NIHR Southampton BRC’s data, health and society theme.

She said: “Data collected with consent is more inclusive and, above all, impactful for new research or improving care,” said

“We ultimately want to develop a ‘data trust’ – a framework for data governance – which puts families who have experienced early pregnancy loss at its centre.

“It would allow them to collectively decide how their information is used to shape support for those who may be affected by miscarriage in the future.”

Workshops are being held with parents who have lived experience of loss, alongside clinicians, policymakers and legal experts.

These sessions explore scenarios featuring a fictional character named Roberta, who navigates pregnancy after loss using digital tools.

“Sadly, some tools fail to account for pregnancy loss, often continuing to send notifications after a miscarriage,” said Professor Michael Boniface, project co-lead and associate director of the Web Science Institute.

“Roberta’s story helps participants surface these challenges and reimagines what respectful, inclusive digital health design might look like.”