Reflections on patient engagement by patient partners: how it can go wrong

Abstract

As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to “meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation” with patient partners as members of teams, rather than participants in research or clinical care. While much has been written about the benefits of patient engagement, it is important to accurately document and share what we term ‘patient engagement gone wrong.’ These examples have been anonymized and presented as 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. The examples provided are intended to demonstrate that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light. This article is not intending to lay blame, rather to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these conversations as that is the only way to change these all too recognizable examples, and which will lead to better project outcomes and experiences for all team members.

Abstract

We are six patient partners in Canada who aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. 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 we feel it is important to document and share what we call ‘patient engagement gone wrong.’ We have anonymized 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. With this commentary, we do not mean to lay blame, and instead wish to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these examples, as that is the only way to change these all too recognizable statements, and which will lead to better project outcomes and experiences for all team members.