Engaged and empowered?

About Engaged and Empowered

User involvement is increasingly seen as important for promoting real-world relevance and reducing research waste. However, it is not well understood how and why user involvement helps, or sometimes hinders, development as well as other stages of complex interventions in health and social care research. This knowledge gap is especially salient for populations experiencing exclusion, sometimes referred to as underserved populations, who experience multiple and intersecting health and social inequalities.

Objectives:

• To understand and describe key mechanisms of user involvement in complex interventions in health and social care research among populations experiencing exclusion in high-income countries.
• We will explore how, why, for whom, and under what circumstances user involvement contributes to the development and other stages of complex interventions in health and social care research among populations experiencing exclusion.
  

Study procedures

We will conduct a six-step realist review. Unlike other reviews which focus purely on effectiveness, a realist review is a theory-driven approach to evidence synthesis that explains how and why interventions work (or do not work) by examining the interaction between context, mechanisms, and outcomes. The six steps include:

1. Clarifying the scope,
   
2. Searching for evidence,
   
3. Selecting and appraising sources,
   
4. Extracting and organising data,
   
5. Synthesising data, and
   
6. Refining the synthesis.

We will search academic databases and grey literature. In addition, we will search Swecris (a database of Swedish-funded research projects from multiple funders) to map the types of user involvement projects with populations experiencing exclusion that are funded in Sweden, and their resultant publications. This will help us better understand both the intentions behind user involvement and how it is implemented in practice.

To promote user involvement throughout the different stages of the realist review, we will consult with: (i) experts with lived experience of exclusion and/or professionals working in inclusion health, and (ii) external academic experts.

We will develop a programme theory (i.e., an explanation of how and why an intervention is expected to work, given the contextual influences and underlying mechanisms of action). This will be shared via an open-access scientific article and conference presentations.