Incorporating and evaluating citizen engagement in health research: a scoping review protocol

Abstract

Background Citizen engagement in research is an emerging practice that involves members of the general public in research processes such as priority setting, planning, decision-making, research conduct, implementation, evaluation, and dissemination. Engaging citizens in research, particularly health research, increases the relevance of study findings, minimizes waste by facilitating stewardship over resources, and builds public trust in the research. While several existing frameworks guide the application of citizen engagement principles to health research, it is unclear how citizen engagement can be utilized to maximize benefits and minimize risks and challenges in health research. To address the gaps in knowledge around citizen engagement in health research, we propose a scoping review to synthesize the state of knowledge on methods to incorporate and evaluate citizen engagement in research. A protocol is presented in this manuscript. Methods The methodology for our scoping review is guided by Arksey and O’ Malley’s framework for scoping reviews, and additional recommendations by Levac and colleagues. We will include peer-reviewed and gray literature that report on citizen engagement in health research (including biomedical, clinical, health systems and services, and social, cultural, environmental and population health) and report method(s) to conduct, measure, or evaluate citizen engagement. We will systematically search electronic databases (MEDLINE, EMBASE, CINAHL, JSTOR, PsycINFO, Scopus, and Science Direct) from inception onwards and search relevant organizations’ websites for additional studies, frameworks, and reports on citizen engagement. Title and abstract and full-text citations will be screened independently and in duplicate. Data will be extracted independently and in duplicate, including document characteristics, citizen engagement definitions and goals, and outcomes of citizen engagement (e.g., barriers, facilitators). Discussion This review will synthesize the definitions, goals, methods, outcomes, and significance of citizen engagement in health research, as well as any potential barriers, facilitators, and challenges outlined in existing literature. The findings will provide an evidence-based foundation for developing new or improved guidance for citizen engagement in health research. Overall, we anticipate that our scoping review will be a preliminary step to meaningful engagement of citizens in research and strengthen the relationship between the scientific community and the public through transparency and collaboration. Systematic review registration Open Science Framework https://osf.io/hzcbr.

A scoping review of methods to measure and evaluate citizen engagement in health research

“…We used the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) to guide the reporting of this scoping review [ 28 ]. A detailed description of the proposed methods has previously been published [ 29 ].…”

“…Using the previously published search strategy [ 29 ], we searched the MEDLINE (Ovid) database from January 1, 2000 to February 1, 2021. We then adapted this strategy to each database to be searched: EMBASE (Elsevier) (January 1, 2000–February 1, 2021), Cochrane Library (Cochrane) (January 1, 2000–February 1, 2021), CINAHL Plus with full-text (Ebscohost) (January 1, 2000–February 1, 2021), APA PsycINFO (ProQuest) (January 1, 2000 – February 1, 2021), Scopus (Elsevier) (January 1, 2000–February 1, 2021), and Web of Science Core Collection (Clarivate) (January 1, 2000–February 1, 2021).…”