Protocol for a scoping review to map patient engagement in scoping reviews

Abstract

Abstract

Background Scoping reviews of health research are increasing in popularity. However, only a minority of scoping reviews in this sector engage patients and caregivers as co-producers of the research. Despite developments in scoping review methodology, which insist that stakeholder consultation is essential, no guiding methods exist to instruct the conduct of this stage. Thus, it is necessary to understand how patients and caregivers have been engaged as part of scoping reviews, toward a unifying methodology.

Methods We have developed a protocol for a scoping review of methods used to engage patients and caregivers in scoping reviews of health research. The search strategy will comprise two phases: the first will involve a secondary analysis of retrieved articles from a prior scoping review, and the second will identify articles that cite Levac et al.’s update to the original scoping review framework by Arksey and O’Malley. Titles and full texts of retrieved articles will be screened in duplicate. Inclusion will be limited to articles related to heath research that follow the six-stage scoping review framework by Arksey and O’Malley and that report patient engagement activities during at least one stage. The method of analysis of charted variables will be decided once data have been collected. Two patients will be engaged as collaborators throughout this review. We will also consult with patients, caregivers, and researchers upon completion of preliminary analyses.

Discussion We anticipate that our scoping review will provide guidance for researchers seeking to involve health care stakeholders as co-producers of scoping reviews.

Plain English summary A “scoping review” is a type of study that collects and summarizes published and unpublished research reports to better understand the amount and types of information available on a particular topic. There is a well-known framework for how to conduct a scoping review, which involves six stages. The sixth stage is optional, and involves consulting with people who have an interest in the research results (i.e., people who the research is “about” or who it will affect the most). Very few scoping reviews actually include this stage, potentially due to a lack of practical guidance on how to perform it. For scoping reviews related to health research, it is important to consult or more widely engage patients and caregivers in the scoping review’s conduct because these individuals have a unique type of knowledge that comes from their experience of a health issue, which can yield valuable insights. Therefore, we have designed a scoping review that will identify the ways in which patients and caregivers have been engaged in scoping reviews of health research in the past. We hope to produce recommendations to make it easier for other researchers to engage patients and caregivers in scoping reviews.