Researchers from Oxford Population Health's National Perinatal Epidemiology Unit, in collaboration with ten children's surgical hospitals across England and Scotland, are leveraging NHS DigiTrials to investigate and improve care and outcomes for children requiring complex surgery soon after birth. The Children’s Surgery Outcome Reporting (CSOR) program seeks to identify variations in care among hospitals for six specific conditions and assess their impact on children's long-term health and quality of life.
The CSOR program focuses on children who have conditions that typically necessitate early surgical intervention. These conditions include Hirschsprung’s disease, gastrochisis, congenital diaphragmatic hernia, oesophageal hernia, necrotising enterocolitis, and posterior urethal valves. The program aims to collect data on approximately 550 children per year initially, with expectations to more than double this number as additional hospitals participate.
How NHS DigiTrials Aids the Research
NHS DigiTrials, developed by the Oxford University Big Data Institute in partnership with NHS Digital, IBM, and Microsoft, facilitates secure access to patient data, thereby enhancing clinical trial reach and impact. Now managed by NHS England, the service identifies and contacts potentially eligible patients for research studies. For the CSOR program, NHS DigiTrials will contact parents of children with the specified conditions to gather data on their child’s quality of life.
Data Collection and Feedback
The information collected from parents will be integrated with data obtained directly from hospitals and other NHS England resources. This comprehensive dataset will enable researchers to pinpoint differences in the care received by children across various hospitals. A structured feedback process will then be implemented to help hospitals understand and implement actions to improve their care practices.
Expert Insights
According to Benjamin Allin, Academic Clinical Lecturer in Paediatric Surgery at the National Perinatal Epidemiology Unit, "The Children’s Surgery Outcome Reporting research database is designed to help improve how successfully children with six rare surgical conditions are treated. Participating in the NHS Digitrials project has given us a mechanism to invite the parents of a large group of children with these conditions to join the database."
Allin further emphasized the importance of this collaboration, stating, "Without this mechanism, the number we could invite would be much smaller, and our ability to understand what influences the success of treatment would be much more limited. By collecting information from a larger group we will be better able to help hospitals that are participating in the research database to improve the way they treat children with rare surgical conditions."
The CSOR program represents a five-year collaborative effort involving the National Perinatal Epidemiology Unit, paediatric surgeons from multiple hospitals, and parents of children who have undergone early surgery. The initiative is funded by the National Institute for Health and Care Research (NIHR) and is led by Professors Marian Knight and Simon Kenny.
