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Table 1 Principles, adjustments and ideas (derived from Arnsteins ladder of participation) that are useful for designing a tool supporting PPI in research projects

From: Designing a tool to support patient and public involvement in research projects: the Involvement Matrix

PrinciplesSuggested adjustmentsRelated ideas and solutions
Ladder for involvementAbout structure:
less focus on hierarchy
Horizontal structure
Separate levelsAbout terminology:
roles instead of levels
Specific roles for patients’ involvement in research and not merely researchers’ involvement
Quantitative divisionAbout reduction:
only roles that imply working together (no decorative roles)
Five roles of involvement:
listener, co-thinker, advisor, partner, and decision-maker
Qualitative divisionAbout description:
clear and distinctive explanation for each of the separate roles
In easy language
- the listener: “is given information”
- the co-thinker: “is asked to give opinion”
- the advisor: “gives (un)solicited advice”
- the partner: “works as an equal partner”
- the decision-maker: “takes initiatives and/or makes decisions”