Life-saving support for babies with complex heart disease will soon be available at the touch of a button, thanks to the development of a new monitoring and reporting app for parents.
The project is co-led by Dr Chris Bowers, Principal Lecturer in Computing at the University of Worcester, and Birmingham City University’s Kerry Gaskin, the UK’s first Professor of Congenital Cardiac Nursing.
She says the mobile app has the power to transform support for parents of babies and children with congenital heart disease (CHD).
“Improving care for children with congenital heart disease and their families is my passion, so I’m thrilled to be co-leading the development of this app,” said Professor Gaskin, who also holds the position of Honorary Nurse Researcher at Birmingham Children’s Hospital.
“Parents will submit data from home in real time rather than waiting for check-ups, allowing cardiac nurse specialists to spot trends and intervene early to prevent deterioration.
“They’ll also have remote access to consultants, via messaging and online appointments.”
Globally, CHD affects 8-10 in 1,000 babies born each year. In 2020, 3,250 babies were born with CHD in England (55.3/10,000 births) and 38% had severe CHD. Around 75% of children born with half a heart survive to the age of five; and 75% of those survivors live to the age of 25.
The Congenital Heart Assessment Tool mobile app – known as CHAT2MA – will revolutionise home monitoring by empowering parents to track, spot, and report early warning signs.
They will be able to use the app to share live updates and upload photos, allowing them to access immediate help from their cardiac team.
“The first year for these vulnerable babies is critical,” said Professor Gaskin.
“They have complex surgery in their first few days of life and before they’re 12 months old.
“But follow-up care currently varies across the country, so we’re working with other children’s cardiac centres to increase the availability of digital home monitoring using CHAT2MA.”
Development of the app builds on the success of the paper-based CHAT diary, developed in 2012 with the support of families of babies undergoing specialist care at Birmingham Children’s Hospital’s Cardiology Service and the charity Little Hearts Matter with parent representatives.
“As health care providers, it’s essential we listen to families and give them a platform to ‘chat’ and communicate openly with us,” said Professor Gaskin. “That’s what this tool is all about.
“Parents become the experts in their child’s condition. CHAT empowers them to feel prepared for discharge, understand what’s normal and what’s not, and use the same language as their clinical team when they call for help, for more timely interventions and better outcomes.”
Funded by an NIHR i4i FAST grant, the prototype CHAT2MA app was co-developed by Professor Gaskin and Dr Chris Bowers in 2022, in collaboration with Professor Jo Wray (Great Ormond Street Hospital), Dr Anna Seale and Dr Tristan Ramcharan (Birmingham Women’s and Children’s Hospital), and Suzie Hutchinson (Little Hearts Matter).
Dr Tristan Ramcharan, Paediatric and Sport Cardiologist at Birmingham Children’s Hospital, said: “This application will be a game-changer for our clinicians and our patients.
“We’ve been using the paper-based CHAT for several years to help parents of babies with complex CHD to understand what is normal and when to seek medical attention.
“Having an app will push the capability of this tool into the smart phone age, allowing parents to submit data for medical staff to check in real time. This will hopefully allow more children to be discharged and monitored at home – with the potential to be used across the UK.”
Dr Chris Bowers, Department of Computing at the University of Worcester and project co-lead, said: “CHAT2MA is an example of how the careful and considered application of technology in very challenging and emotive circumstances can help not only improve outcomes for infants but also the experience of parents and healthcare professionals.”
SPARK The Midlands, a global accelerator programme delivered by Aston University, is supporting the project with a £25,000 grant.
Luke Southan, Director of SPARK The Midlands, said: “There is a clear, unmet clinical need to support patients born with complex heart problems. One of the single best ways we can do this is by enabling parents and carers to better understand, monitor, and manage these children.
“The CHAT app is such a simple and intuitive solution. At SPARK, we think it’s imperative that we support it and ensure it gets into the hands of end users as quickly as possible.
“Not only do we see long term benefits for the children, but we also believe the app can help improve the workflows of healthcare professionals.
“Ultimately, it could act as a platform for supporting the monitoring needs of many other rare disease states bringing significant value to the NHS.”
The app is undergoing development and testing ahead of launch in 2026-27.