Comment on "Reflections on patient engagement by patient partners: How it can go wrong".

ABSTRACT

As patient-advocacy, public policy and clinical researchers with special knowledge on Responsible Research Innovation (RRI) governance and the public health and psychology underlying patient engagement, we read with interest the comment contribution by Richards et al., "Reflections on patient engagement by patient partners How it can go wrong" (Richards et al. in Res Involv Engagem 941, 2023. https//doi.org/10.1186/s40900-023-00454-13 ). As a way to help meet the "take-away actions for readers" included by the authors at the end of the article, we would like to further stimulate discussion with relevant stakeholder communities about the need to rethink the use of "expert patient". Based on our experience, the lack of a governance model engaging patients who are representative of the target patient community, as opposed to expert patients, is at the root of the tokenistic approach, the "patient partner as a checkmark statement" and the "lack of recognizing the vulnerability of patient partners", which results in "patient engagement going wrong". According to our experience, the Responsible Research Innovation (RRI) MULTI-ACT model has the potential to help meet these challenges.

In their article, Richards et al. (Res Involv Engagem 941, 2023. https//doi.org/10.1186/s40900-023-00454-13 ) reflect on the practices of patient engagement in research, highlighting not only the value and opportunity of including people suffering from a disease as coinvestigators in the research process but also the risks and errors that must be avoided in such a process. Along this line of discussion­and based on our experience of research, teaching and patient advocacy­we further reflect on the nature of the concept of "expert patient" in this paper. In particular, we argue for the importance of guaranteeing the wide inclusion of all the different kinds of "experiential knowledge" that patients may bring into the research project, and we question the risk of a poorly representative approach if only guided to select patients with acquired knowledge and expertise about the scientific research process itself. Based on our experience, the Responsible Research Innovation (RRI) governance models have the potential to help meet these challenges.