Dissemin is shutting down on January 1st, 2025

Published in

BioMed Central, Research Involvement and Engagement, 1(9), 2023

DOI: 10.1186/s40900-023-00534-2

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Comment on “Reflections on patient engagement by patient partners: How it can go wrong”

Journal article published in 2023 by Paola Zaratin ORCID, Usman Khan, Guendalina Graffigna
This paper is made freely available by the publisher.
This paper is made freely available by the publisher.

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Postprint: archiving allowed
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Published version: archiving allowed
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Abstract

AbstractAs 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 9:41, 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.