Childhood healthcare experts at the Great North Children’s Hospital were recently presented with a young patient and engagement award from the Royal College of Paediatrics of Child Health (RCPCH).
The team won the Paediatrics Involvement and Engagement in Research (PIER) prize for their PERFORM project – a multi-disciplinary approach towards involving and engaging children and young people in their research.
The PIER prize is run by the RCPCH in partnership with the National Institute for Health Research (NIHR) and the PERFORM team were delighted to hear that they beat a number of excellent applications to win the prize.
The PERFORM team includes Dr Emma Lim, Professor Marieke Emonts, Dr Jo Ball, Dr Jethro Herberg and Young Person’s Advisory Group North East (YPAG-ne).
The PERFORM study aims to develop new diagnostic tests for childhood fevers, to help differentiate the cause of fevers and identify which children are at risk of serious infections.
Children and young people (CYP) were involved in the study from the very beginning, helping shape the resources and the consent process, in addition to inspiring many initiatives such as a pop-up hospital.
Dr Emma Lim explains more about the PERFORM project and the value of involving children and young people in research.
“Fever is one of the most common and important medical problems in children,” says Dr Lim. “Parents identified that while many cancer trials exist there was a lack of research around childhood fever. “How do we tell the difference between bacterial and viral infections?” and “How can we predict which children are going to get seriously ill?” are questions that haunt both paediatricians and parents.
“These became the aims of the PERFORM study, to develop new molecular diagnostic tests to help identify which children are at risk of serious invasive infections and what the cause of childhood fevers.”
The team believe that to make the study successful, they needed to involve children, young people and their families in the research.
“From the beginning our study was designed and co-produced by children and young people (CYP),” continues Dr Lim.
“We undertook a four-year project with the Young Person’s Advisory Group North east (YPAG-ne) to explore views on consent and review consent forms. The study received National Ethics Committee approval based on this work.”
Maisie Ward YPAG-ne member added: “Educating adults on children’s and young people’s views is important. If researchers understand our views better then, they can design better studies, surveys and information and educational resources for us. We want to help them help inform us.”
I think that so many people underestimate what they can accomplish and I thought it would be a good way to highlight how CYP can really be involved and engaged in paediatric research.Dr Emma Lim, Consultant Paediatrician and member of the PERFORM team
Of the project Professor Nick Bishop, Vice President for Science and Research said: “Emma Lim and her team have been working on co-production of work on molecular diagnostics for childhood fever in order to identify those at most risk of serious infections.
“At the heart of the PERFORM study is the concept of co-production – working with CYP and parents to develop the study and take it forward. They have developed together innovative approaches to proportionate consent, the use of CYP’s anonymised data, and involved CYP not just in the study itself but also the dissemination of the results, working to create a pro-research culture. This is a model that we can all use in our future research.”