Table 1 Principles, adjustments and ideas (derived from Arnsteins ladder of participation) that are useful for designing a tool supporting PPI in research projects
Principles | Suggested adjustments | Related ideas and solutions |
|---|---|---|
Ladder for involvement | About structure: less focus on hierarchy | Horizontal structure |
Separate levels | About terminology: roles instead of levels | Specific roles for patients’ involvement in research and not merely researchers’ involvement |
Quantitative division | About reduction: only roles that imply working together (no decorative roles) | Five roles of involvement: listener, co-thinker, advisor, partner, and decision-maker |
Qualitative division | About 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” |