Use of a standardized set of consent elements can support the development of the federated Canadian Human Genome Library, in which advanced machine learning methods can be applied to determine which genetic factors contribute to health and disease for those living in Canada.
Background: Patient-oriented research (POR) incorporates patient partners as members of a research team. With the strengths and challenges of POR starting to emerge, one challenge we explore here is the research ethics application and review stages. Methods: We report the findings of a self-administered web-based survey in English and French for Canadian researchers or research ethics board (REB) perspectives (i.e., REB members or administrators) about the preparation and review of research ethics applications when patient partners are team members. The results are based on 165 survey responses and the team includes two patient partners who contributed fully to the conception, design, execution, interpretation of the findings, and in writing this manuscript.Results: The large majority of both groups correctly defined patient partner and had experience either reviewing or writing an application that included patient partners. REB perspective respondents indicated seeking more information to clarify patient partners’: roles, privacy training, experience/expertise, conflicts of interest, training, compensation; and at what stage the patient partner was recruited. Researchers indicated receiving questions about patient partners’: roles, training, compensation, access to data and participant information, affiliation, and curriculum vitae. Ideas related to adding questions to ethics applications about patient partners followed similar themes. Interpretation: This work reveals the knowledge base of REB perspectives and researchers in Canada with respect to ethics applications that include patient partners on research teams. We provide ideas for future work to help make the research ethics review and submission more efficient and clearer when patient partners are on research teams.
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