Background: patient and public (consumer) engagement (PPE) during the design and conduct of systematic reviews is an important step; offering consumers an opportunity to maximize their engagement in the decision-making process. However, there is limited guidance on how to engage consumers in systematic reviews.
Objectives: to report on our experience with PPE during the design, grant application and conduct phases of our knowledge synthesis project on emergency department (ED) overcrowding.
Methods: during the design phase, with a funding award and recruitment support from the Manitoba, Alberta and Quebec Strategy for Patient-Oriented Research (SPOR) SUPPORT Units, we identified and recruited people with lived experience visiting the ED. We used a two-step modified Delphi process to engage them at a 'collaborate level' (consumers as active research partners) to help refine our review question and identify key patient-focused review outcomes. First, we conducted individual face-to-face meetings (semi-structured interviews with open-ended questions), followed by thematic analysis and a 'group consensus meeting' facilitated by PPE experts, to arrive at a consensus regarding the review question and the outcomes. After obtaining further funding, we conducted PPE at a 'collaborate level': in development of search strategy, locating grey literature, interpretation of review findings within the context of their experience, and dissemination of results (ongoing).
Results: we engaged a diverse group of 12 consumers (self-identified as indigenous, white, or immigrant) from three Canadian provinces. Discussions during the design phase helped to refine the review question to focus on 'primary care interventions' to reduce overcrowding, and to identify patient-focused review outcomes. Later, consumers supported a successful grant application as principal knowledge users. During the conduct phase, consumers helped in the identification of additional relevant search terms (e.g. 'trauma care' and 'indigenous health care') and made suggestions to remove other terms from draft search strategy. They also reviewed abstracts of included studies and provided suggestions on grey literature. We will discuss further contribution of consumers in the interpretation of the study results (stakeholder meeting, June 2019) and in the knowledge dissemination process (planned plain language/executive summary/reports, September 2019), at the time of the presentation.
Conclusions: PPE during the design and conduct of our review helped us identify research priorities, refine our research question, identify patient-focused outcomes, obtain valuable feedback on the search strategy, and identification of unpublished literature. We also hope that further PPE in the interpretation of the results and in the knowledge dissemination process will meaningfully contribute to our project.
Patient or healthcare consumer involvement: healthcare consumers were involved throughout this project.