Is knowledge translation without patient or community engagement flawed?

ABSTRACT

Background: The engagement of patients/individuals and/or communities has become increasingly important in all aspects of the research process. Objective: The aim of this manuscript is to begin the discussion about the use and implementation of authentic engagement in the development of presentations and manuscripts which evolve from research that has engaged patients/individuals and/or communities. Methods: Community-Based Participatory Research; Transformative Action Research. Results and Discussion: In Canada, the framework for engaging patients/individuals and/or communities is clearly outlined in Chapter 9 of the Tri-Council Policy Statement Ethical Conduct for Research Involving Humans which indicates that when research projects involving First Nations, Inuit and Métis peoples, the peoples in these communities are to have a role in shaping/co-creating the research that affects them. It is increasingly important that presentations and manuscripts that evolve from results/findings which have engaged patients/individuals and/or communities be co-presented/co-published. Presentations are often done without patients/individuals and/or communities and manuscripts published with only academic authors. Frequently, grants submitted and subsequently funded do not consider this aspect of the process in the budget which makes integrated and outcome knowledge translation, dissemination and distribution by and with patients/individuals and/or communities difficult to facilitate. Conclusions: This manuscript was designed to begin the discussion at various levels related to authentic engagement in the development of presentations and manuscripts which evolve from research that has engaged patients/individuals and/or communities. How will you include patients/individuals and/or communities in your presentations and publications?