Project 461018

Patient engagement in research is where individuals with personal experience of a health issue and caregivers (e.g., family and friends) get involved in the research process - not as study subjects, but as collaborators in research planning, execution and dissemination. The importance of patient engagement in research is becoming more recognized in Canada and internationally. People with lived experience and researchers are advocating for greater and more meaningful engagement - and, for some research funding organisations, it has become an expectation. Biomedical research is one type of research funded by the Canadian Institutes of Health Research (CIHR). One of the defining features of biomedical research is that it is not typically conducted on humans. Most of the work is highly specialized and done in a laboratory, where researchers never interact with patients or caregivers; all this creates certain challenges to patient engagement. Although patient engagement in biomedical research has been described as feasible and beneficial, there are still unresolved questions about how to do this in a way that is useful to both researchers and patient partners. We are proposing to bring together biomedical researchers (including trainees), people with lived experience of dementia and researchers with expertise in patient engagement. Through a series of meetings and discussions, we will build skills within our team of patient partners and researchers. Through this networking and collaboration, we will develop a plan to meaningfully integrate patient engagement into biomedical research. Our findings will be used for a specific research grant application we are developing, but will also help other patient partners, researchers and research organisations find ways to incorporate patient engagement into their biomedical research.