PPI Phase 1 - YPAG activity review - May 21
Public and Patient Involvement and Engagement is a core element of the project to provide
feedback and advice to the consortium members on product development, sampling protocols and information materials. Key partners include the Young Person Advisory Groups North England (YPAG NE) and Great Ormond Street Hospital (YPAG GOSH), the parent organisation PORT, as well as Vesynta. Our PPIE activities are co-created by our Engineering & Translational teams and in return PPIE outcomes strongly influence their decisions.
On the 27th of May 2021 a ChromaDose YPAG Phase 1 Activity Review took place with project lead Prof Stefan Guldin (UCL), design lead Dr Alaric Taylor Design (Vesynta) and PPI lead Lisa Pfaffenrath (UCL) to review the work of the last months and discuss future steps of ChromaDose. In total 10 consortium members from 5 different partners participated in the event, covering the entire spectrum of PPI, translation, and technical development.
The session was based on the learning outcomes of the YPAG Phase 1 activities, which included an online survey with over 60 participants as well as remote sessions with YPAG NE and YPAG GOSH. These focused on the themes of blood sampling, confidence in technology and involvement using interactive whiteboards and google forms for individual consultations.
Discussion points with the engineering team were raised regarding the design and the technology (noise generation critical aspect, quality control light, time display which shows the progress of the blood analysis), as well as the appearance of ChromaDose (child friendly and less technical, colourful and not too big with human features and a talking voice). Another topic were our findings around additional blood sampling and participation in clinical studies, where we elaborated on motivating and demotivating factors.
Finally, we discussed actions to ensure continuous involvement and engagement with the YPAGs, which is necessary for the envisioned co-creation process. We agreed that it is important to regularly update the participants on the study and inform them about the impact of their participation, advantages of the project as well as challenges the researchers are facing.