A scoping review of methods to measure and evaluate citizen engagement in health research
Date
2022-12-10
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Abstract
Abstract
Background
Citizen engagement, or partnering with interested members of the public in health research, is becoming more common. While ongoing assessment of citizen engagement practices is considered important to its success, there is little clarity around aspects of citizen engagement that are important to assess (i.e., what to look for) and methods to assess (i.e., how to measure and/ or evaluate) citizen engagement in health research.
Methods
In this scoping review, we included peer-reviewed literature that focused primarily on method(s) to measure and/or evaluate citizen engagement in health research. Independently and in duplicate, we completed title and abstract screening and full-text screening and extracted data including document characteristics, citizen engagement definitions and goals, and methods to measure or evaluate citizen engagement (including characteristics of these methods).
Results
Our search yielded 16,762 records of which 33 records (31 peer-reviewed articles, one government report, one conference proceeding) met our inclusion criteria. Studies discussed engaging citizens (i.e., patients [n = 16], members of the public [n = 7], service users/consumers [n = 4], individuals from specific disease groups [n = 3]) in research processes. Reported methods of citizen engagement measurement and evaluation included frameworks, discussion-based methods (i.e., focus groups, interviews), survey-based methods (e.g., audits, questionnaires), and other methods (e.g., observation, prioritization tasks). Methods to measure and evaluate citizen engagement commonly focused on collecting perceptions of citizens and researchers on aspects of citizen engagement including empowerment, impact, respect, support, and value.
Discussion and conclusion
We found that methods to measure and/or evaluate citizen engagement in health research vary widely but share some similarities in aspect of citizen engagement considered important to measure or evaluate. These aspects could be used to devise a more standardized, modifiable, and widely applicable framework for measuring and evaluating citizen engagement in research.
Patient or public contribution
Two citizen team members were involved as equal partners in study design and interpretation of its findings.
Systematic review registration
Open Science Framework (10.17605/OSF.IO/HZCBR).
Plain English Summary 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.
Plain English Summary 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.
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Citation
Research Involvement and Engagement. 2022 Dec 10;8(1):72