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 sorted into four categories: 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 examples are intended to demonstrate that patient engagement gone wrong is more common than discussed, and to simply bring these experiences to light. This article is not intending to lay blame, rather to evolve and improve patient engagement initiatives. We ask those who interact with patients 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 scenarios, and which will lead to better project outcomes and experiences for all team members.

Integrating the patients' voice in designing and delivering a research study: The Yorkshire Cancer Research funded PREHABS study's experience

“…Whilst we often believe that we are advocates for our patients' and understand their point of view, we sometimes allow our unconscious /conscious/ inherent biases to influence our beliefs 2 . For a service or research project to be accepted by our patients, we need to ensure that we have engaged with our audience.…”