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

Involving members of the public (citizens) in health research is important. It helps make sure that research focuses on issues that are most important to citizens. It also helps ensure that the research done is respectful of citizen participation and most likely to provide benefit. However, the best way to engage citizens in research is unclear. In this scoping review, we examined existing studies that assessed citizen engagement in health research. We found that citizen engagement was often assessed by asking for feedback from both citizens and researchers. Feedback was collected in person (one on one interviews or group discussions) or in writing (using surveys or audits). Frameworks (organized ways of thinking about an issue) were also sometimes used to measure empowerment, impact, respect, support, and value of engaging citizens. It was clear from the frameworks that there is a need to develop clearer roles for citizens in research. The two citizen members of our research team who helped interpret our study findings felt that a set of guidelines for citizens to help them best participate in health research needs to be developed. We believe these observations could be used to create a more standard method for assessing citizen engagement in research.