Background Patient engagement in research refers to collaboration between researchers
and patients (ie, individuals with lived experience including informal caregivers) in
developing or conducting research. Offering non-financial (eg, co-authorship, gift) or
financial (eg, honoraria, salary) compensation to patient partners can demonstrate
appreciation for patient partner time and effort. However, little is known about how patient
partners are currently compensated for their engagement in research. We sought to assess …

Patient engagement in research has many benefits including the alignment of research
aims, projects, and outcomes with those of the ultimate end-user. As a result, patient
engagement is becoming increasingly established in many areas of health research.
Missing from this growing body of evidence are details about how patient partners (ie,
individuals with lived experience of a health condition including informal caregivers, family
and friends) are compensated for their contributions as well as existing barriers or …