Reflections on patient engagement by patient partners: how it can go wrong (12 June 2023)

Summary

Patient engagement refers to “meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation,” where patient partners are members of the teams, rather than participants in research or those seeking clinical care. It appears more has been written on the benefits rather than the risks of patient engagement and the authors in this study feel it is important to document and share what they call ‘patient engagement gone wrong.’

The authors anonymised these examples and sorted them into four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. These statements and their examples are meant to show that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light.