Professor Dan Perry was recently recognised in the VC PER awards where he received Highly Commended in the Projects Category for his work to involve children and parents in helping to shape as many aspects of his paediatric trauma trials as possible including priority setting, trial development, grant application and research management.
We now have the most active children’s orthopaedic trials group in the world, with integrated engagement from children and parents integral to our past, present and our future.
- Prof Dan Perry
Surprisingly little high-quality research has been conducted into the best treatment for broken bones in children. Clinical trials were developed to explore this. In the video above, he describes his work with children and parents on the FORCE and SCIENCE studies.
Surgeons have sometimes been somewhat reluctant to engage in clinical trials, as there is a perception that this shows uncertainty that would not be appreciated by families, as it would challenge the authority of surgeon or their perceived ability to make decisions. Furthermore, some surgeons believed that some treatments were “unacceptable” to patients – only to discover that quite the opposite was true!
With engagement from families and the public, Professor Dan Perry and his team have empowered surgeons to question their practice. They have developed clinical trials that are acceptable to families, with information content developed by children, parents and educationalists to ensure that it is appealing and accessible. Patients and children have been integral throughout the research.
I really wanted to do it. Seeing as the hospital team had done such a good job for me it was great for us to have the opportunity to give something back
- Evan, 13 years old
Children and parents have told the team throughout that both the trial itself and the way participants interact with it need to be appealing to them. The team have, therefore, worked with parents, children and educationalists to change the face of trials – by developing the first wholly digital trials in NIHR. They moved away from paper information, replacing it with fun cartoons and doctor, nurse parent and child interviews. An example of what a patient-centred website looks like in practice can be seen at www.ScienceStudy.org.
Parents and young people involved in this project wanted to impact the healthcare system positively. This process gave them a chance to influence research that might directly affect them or their peers.
This engagement work is now as example of good practice nationally for the National Institute for Health Research. Likewise, a team from the US are using this engagement to base their own work in a submission to the US National Institute of Health (NIH).
We were treated as equal partners. We didn’t feel like the token patients who had to be asked. It felt like everybody really wanted to hear what we had to say and it was really valuable.
- Phillipa Burgess (Parent and Grant Co-applicant)
Phoebe, a parent and grant co-applicant said
"I never imagined that I would be part of a research study. It has been so interesting being involved from the beginning of the study (and so important too). It’s meant I’ve had a real insight into how a research study works and develops and how, as the lay member, I can provide feedback, have my opinions listened to and I can see first hand how they help shape the study.
As a parent (of two young children), it has been a really rewarding experience to be a member of the team. Dan Perry the Principal Investigator, and the entire team have been fully supportive of my opinions and treated them as valuably as the leading academics. I definitely think the children’s trauma trials team really value the input of non-experts, and the expertise that they bring."