Trail blazers
The potential for data to transform paediatric care has accelerated rapidly since 2018 when we introduced electronic patient records and our DRE. However, it is our trail blazing staff that have established GOSH as a pioneer in clinical data science by pursuing their innovative project ideas.
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Hear from Professor Eleanor Main and Dr Richard Issit below.
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Professor Eleanor Main, University College London (UCL) Great Ormond Street Institute of Child Health
"Cystic fibrosis (CF) is a genetic condition that mainly affects the
lungs and digestive system. A build-up of mucus in the lungs can cause breathing problems and children with CF need to do many treatments every day to keep them well, including regular physical activity and airway clearance to clear excess mucus from the lungs.
These treatments are time consuming and burdensome for children and families. Project Fizzyo wanted to see if there were ways to make these treatments easier and more fun to do. It also aimed to find out whether how often and how well these treatments were done at home would make a difference to clinical status.
Remote monitoring devices, such as activity trackers, and gamification of exercises using technology offer hope for improving physiotherapy, and Project Fizzyo is leveraging this to change physiotherapy for children with CF. We won the Ability.Net Digital Health Award in recognition of this work, as well as further funding from Rosetrees and Stoneygate Trusts, and the CF Trust to expand our research in CF.
The GOSH DRIVE team were partners in developing our new digital health technology from day one. Use of the DRE infrastructure and the support of data science experts helped our team to gather the necessary data securely and efficiently for a clinical trial on airway clearance and physical activity. They also supported our team to work with Microsoft to develop computer games to encourage self practice
of breathing exercises.
When the DRE launched in 2018, it felt like a miracle that data were pouring in, the likes of which we’ve never seen before. It was fantastic that we could now securely access data that measured and visualised every single breath, of every single airway clearance treatment, and every heartbeat and footstep that our participants took during the study to evaluate the impact on clinical outcome. This type of evidence from innovative technology can also allow healthcare professionals, like me, to be far more focused in the advice we give to patients."