A new initiative leveraging NHS DigiTrials aims to improve the reporting and outcomes of children's surgery across England and Scotland. Researchers from Oxford Population Health’s National Perinatal Epidemiology Unit, in collaboration with ten children’s surgical hospitals, will utilize NHS DigiTrials to investigate and enhance care for children requiring complex surgery shortly after birth.
The Children’s Surgery Outcome Reporting (CSOR) program focuses on identifying variations in care provided to children with six specific conditions necessitating early-life surgery. These conditions include Hirschsprung’s disease, gastrochisis, congenital diaphragmatic hernia, oesophageal hernia, necrotising enterocolitis, and posterior urethal valves. The program also assesses how this care impacts the children’s long-term health and quality of life. The ultimate goal is to provide hospitals with evidence-based recommendations for improving their surgical practices.
NHS DigiTrials, originally developed by the Oxford University Big Data Institute in partnership with NHS Digital, IBM, and Microsoft, facilitates secure access to patient data to optimize clinical trial reach and impact. Now managed by NHS England, the service identifies potentially eligible patients for research studies and contacts them on behalf of researchers to gauge their interest in participation.
CSOR will employ NHS DigiTrials to contact parents of children with the aforementioned conditions, gathering data on their child’s quality of life. This information will be integrated with data collected directly from hospitals and other NHS England resources to pinpoint disparities in care. A feedback mechanism will then be implemented to guide hospitals in adopting strategies for improved care delivery.
Initially, researchers intend to collect data on approximately 550 children per year. According to Benjamin Allin, Academic Clinical Lecturer in Paediatric Surgery at the National Perinatal Epidemiology Unit, '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,' he added, '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.' If the program proves successful, the number of participants is expected to more than double as more hospitals join the initiative.
The CSOR program represents a five-year collaborative effort involving the National Perinatal Epidemiology Unit, pediatric surgeons from various hospitals, and parents of children who have undergone early surgery. It is funded by the National Institute for Health and Care Research (NIHR) and is led by Professors Marian Knight and Simon Kenny.
