A Journey of Digital Co-Production: Introducing the “E-Nabling Digital Co-Production” Framework and Its Performance in Dementia Research

Abstract

Background The rapid transition to digital working, accelerated due to the response to the COVID-19 pandemic, has impacted the involvement of patients and public in research. For this reason, this paper presents a narrative of a co-production journey experienced by a Participant and Public Involvement (PPI) group since the lockdowns and recommendations regarding digital working in England, followed by a practical implementation of a framework within the context of dementia research. Methods Three online workshops were performed with a group of researchers, facilitators and contributors with experience in PPI in dementia research, and a dementia PPI group that kept working during the pandemic. Thematic analysis was chosen for the data analysis. The project was targeted as a PPI activity and the MindTech Involvement Team (PPI group) was involved in the entire process. Results After a refinement of the coding structure, the MindTech Involvement Team and Project Leaders identified the potential of using four coding areas resulting in the ‘E-nabling Digital Co-production' Framework. Through this framework, conflicting positions were identified associated with the transition to digital working. Two main remarks were shared by the participating groups regarding e-PPI; the wider potential in terms of non-geographical constraints, and the perspective of more business-like sessions with reduce social interactions and communication. Specifically for dementia research, e-PPI may allow participants to attend more meetings, although the mutually supportive environment of face-to-face meetings is diminished, and carers can miss out on respite opportunities. Conclusions This public engagement activity introduced the ‘E-nabling Digital Co-production' Framework showing an initial potential for the analysis of e-PPI flaws and benefits. It was possible to identify insights of e-PPI regarding general concerns and specific to dementia research. However, the most significant contribution of the framework is the potential to support local journeys of co-production in ongoing public involvement activities.