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Experiencing the digital working transition in participant and public involvement in dementia research during the COVID‐19 pandemic

Ulate, Mauricio Molinari; Woodcock, Rebeca; Smith, Isabelle; van der Roest, Henriëtte G.; Martin, Manuel Angel Franco; Craven, Michael P


Mauricio Molinari Ulate

Rebeca Woodcock

Isabelle Smith

Henriëtte G. van der Roest

Manuel Angel Franco Martin


Involvement of patients and public in research have been disrupted by the consequences of the COVID-19 pandemic, forcing a rapid transition from face-to-face meetings to digital working as an alternative to engage experts by experience. This project presents a co-production experience of a Participant and Public Involvement (PPI) group implementing a framework in dementia research, during this transition period.

A PPI activity was developed with the participation of the MindTech Involvement Team (PPI group) through the entire process. A group of experienced researchers, facilitators, and contributors in PPI in dementia research, and an active PPI group during the pandemic were targeted. Three online workshops were performed, and thematic analysis was chosen for the data analysis.

Conflicting positions were identified regarding the transition from face-to-face meetings to digital working by using a refine version of the ‘E-nabling Digital Co-production' Framework as the coding structure. Regarding e-PPI (digital PPI), the participating groups shared two perspectives associated to the non-geographical constraints and the more business-like sessions. For dementia research, e-PPI was identified to decrease the supportive and respite environment associated to face-to-face meetings, however, it was considered to allow the participants to attend more meetings.

The project gives feedback on the digital working in PPI by identifying concerns and fortes of this transition, both for general PPI and in the field of dementia research. It contributes further co-production initiatives by introducing the ‘E-nabling Digital Co-production' Framework as a tool to reflect on future public involvement.

Journal Article Type Meeting Abstract
Acceptance Date Jul 14, 2022
Online Publication Date Jun 16, 2023
Publication Date 2023-06
Deposit Date Aug 14, 2023
Print ISSN 1552-5260
Electronic ISSN 1552-5279
Peer Reviewed Peer Reviewed
Volume 19
Issue S5
Article Number e067824
Keywords Psychiatry and Mental health, Cellular and Molecular Neuroscience, Geriatrics and Gerontology, Neurology (clinical), Developmental Neuroscience, Health Policy, Epidemiology
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