Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search

Abstract

Plain English summary Unfortunately, citizens living in vulnerable circumstances are seldom engaged in research or policymaking. Think of, citizens living in poverty, those with an ethnic minority background or citizens with mental health issues are often excluded. Their involvement is, however, crucial to prevent growing (health) inequalities. To support the engagement of people living in vulnerable circumstances we conducted a literature review. We looked for strategies, tools, and methods that could support the inclusion of these citizens in research or policymaking. In total, 40 studies were identified and analysed. The main finding is that strategies tools, and methods are always context depended. Researchers should always ask: What works for whom in which context? We, therefore, stress the importance of close collaboration with experienced owners and community based organisations from the start. Also, more attention should be paid to how engagement practices are designed, implemented and evaluated. Think of, strict deadlines which limit the time to build trust. Or low budgets that limit the options to create the right preconditions, think of recruitment and data collection in multiple languages. To make sure that not only the ‘usual suspects’ but also citizens living in vulnerable circumstance will be engaged attention is needed from advocacy groups, research funders and researchers. All these actors need to reflect more often on the question what they can do to change the current research and policymaking culture in such a way that it will support the engagement of citizens living in vulnerable circumstances.

Keywords

• Narrative review
• Public engagement
• Patient engagement
• Citizens living in vulnerable circumstances
• Socioeconomic inequalities
• Health inequalities