ELICITING DEMENTIA RESEARCH PRIORITIES FROM CANADIANS

Individuals with direct experience of dementia, either personal or professional, have important insights that should be incorporated into the dementia research agenda. The reasons for involving the public in determining research priorities are both methodological (i.e., better, more relevant research and knowledge translation) as well as ethical (i.e., democratizing the allocation of scarce research funds). Recognizing the importance of this patient partnership, the Alzheimer Society (Canada) is collaborating with the Canadian Consortium on Neurodegeneration in Aging on a process to elicit research priorities from Canadians. This study, the Canadian Dementia Priority Setting Partnership, is following the methods of the James Lind Alliance (UK) to elicit research priorities from Canadians with dementia, their friends, family and caregivers, health and social care providers, and others. The methods include an open, cross-Canada survey, in collaboration with national, provincial and local Alzheimer Societies and other partner organisations, seeking to engage a broad representation of Canadians to submit their priorities for dementia research. The research questions generated by this survey will be refined, systematically checked against current research evidence, and then prioritized through a two-stage process (including a final in-person workshop). The work is being overseen by a Steering Group, which includes people with personal and/or professional experience of dementia working with the study team. The Alzheimer Society will use these priorities to inform their research funding through the Alzheimer Society Research Program (ASRP), as well as promote the results with other research funding organisations and researchers, including the roughly 350 investigators that make up the Canadian Consortium on Neurodegeneration in Aging.