Patient‐Public Involvement (PPI) in Dementia Trials Ireland (DTI): A network to increase capacity and capability to deliver clinical trials for dementia in Ireland

Abstract

AbstractBackgroundDementia Trials Ireland (DTI) is a newly developed national network to increase capacity and capability to deliver clinical trials for dementia in Ireland. DTI activities are informed by a panel of people with lived experience of dementia and their care partners, following principles of 'patient and public involvement and engagement (PPIE).MethodPeople with lived experience of dementia joined the DTI panel to provide consultation on the design and conduct of industry‐sponsored and investigator‐led clinical trials, providing insight into the lived experience of dementia. Monthly meetings and consultation workshops enable panel members to provide feedback to the DTI trial teams.ResultThirteen PPI panel members represented lived and care partner experience of FTD, AD, LBD, VaD have informed the following DTI network activities: (1) Advising on appropriate language use for trial Participant Information Sheets; (2) Co‐developing the logo for DTI; (3) Advising on our website and video content; (4) Representing DTI at online conferences and workshops; and (5) Providing researchers and clinicians with feedback on the lay summaries of scientific papers.ConclusionThe panel has made meaningful changes to various outputs and activities of the trials' network, ensuring that the perspectives of people with lived or caregiver experience of dementia are included.