‘Patient and Public *involvement’ is referred as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’ ‘about’ or ‘for’ them’. In contrast, ‘Patient and Public *engagement ’ (PPE) in research is where information and knowledge about research is provided and disseminated. More info can be found on the NIHR website (link).
In ChromaDose, we are aiming to make both Patient and Public Involvement and Engagement core elements of our project. The impact that the Great Ormond Street Hospital for Children (GOSH) Young Persons’ Advisory Groups (YPAG) and YPAGne (North East) (but also other stakeholders, such as patients and their families) have on our technology can be seen in many facets of our product design cycle as well as various use cases.
While many of our activities contain both elements of PPI and PPE, a first session purely focused on Patient and Public Engagement took place on the 25th September 2021, which was delivered by Design Lead Dr Alaric Taylor and Project Lead Dr Stefan Guldin. The aim was to inform GOSH YPAG about results and learning outcomes from previous PPI activities, including consultation via personalised online surveys (phase I) as well as via live online sessions (phase II). Key outputs were shared with the YPAG members, including how their work was received by the Engineering team, how it was covered in the NIHR GOSH BRC PPI Impact case study, summarised in an Activity Review report and presented in the form of a scientific poster at the International Congress of Therapeutic Drug Monitoring and Clinical Toxicology. Furthermore, we discussed our future planned activities, including our aimed co-creation of the device design as well as patient information materials.
