G.P.286 - Developing digital tools for improving patient and family engagement in paediatric clinical research

Abstract

Due to a lack of effective treatments for rare inherited paediatric muscle disease, many parents report that clinical trials offer their only hope of a therapy for their child. Under these circumstances clear, engaging information about clinical trials is crucial in order to better enable informed decisions and create an environment of ongoing discussion and collaboration between clinicians, trial staff and families recruited. This is important in order that a partnership is created where patients have a voice and are involved in decision making and planning rather than being subjects on whom research is carried out. Therefore, to better explain a trial to (child) participants and facilitate discussions with families, the John Walton Muscular Dystrophy Research Centre has developed a screen-based animation as part of an FP7 funded NIHR Portfolio DMD exon-skipping trial. The voice of a boy of similar age to trial participants narrates the animation. This means text is minimal – important in a possibly pre- or poor-literate age group. Feedback from trial participants and expert workshop discussions suggests that this interactive digital provision can result in increased engagement and understanding. The next development phase will create an interactive digital App to be used on an iPad or tablet which will provide a platform to better engage and inform children (and their families). It will explain difficult concepts using digital animation as well as audio and activities to test understanding and include the possibility to personalise the App. The digital functionality will allow the collection of metrics and usage statistics in order that further improvements and adjustments can be made, the measuring of understanding through carefully designed ‘games’ and questions and the opportunity for children to voice-record their thoughts and questions to be shared (if they wish) with the trial team at subsequent clinical visits or via virtual interaction with a clinician.