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.

‘Keeping it real’: A qualitative exploration of preferences of people with lived experience for participation and active involvement in mental health research in Australia

“…Lived‐experience researchers can sit in a liminal space, able to inhabit both consumer and professional research identities, both a critical ingredient and a dynamic often creating ambiguity and related difficulties 23,24 . These issues go to the heart of how experiential knowledge is valued within the hierarchies of academia and the dominant research agendas 25 . As with any venture, related literature has documented other barriers and challenges to the involvement of people with lived experience in research.…”

Bâtir des relations-patients-partenaires durables : perspectives sur des aspects cruciaux

“…Dans les analyses thématiques de 41 articles, les motivations altruistes, personnelles et liées à la maladie ont été identifiées comme des facteurs incitant les patients partenaires à contribuer aux projets de recherche, et les expériences de ces patients partenaires ont été généralement positives (Lauzon-Schnittka et al, 2022). D'autres recherches récentes se sont concentrées sur l'orientation des chercheurs en vue d'améliorer efficacement l'engagement des patients ou proposent des listes de vérification sur la manière d'éviter le tokénisme (Hahn et al, 2017;Richards et al, 2023;Tscherning et al, 2021). Cela a même conduit à l'élaboration de programmes de formation (Nielssen et al, 2023).…”

“…Les chercheurs et les cliniciens se sont formés pendant des années à la méthodologie de la recherche, aux traitements potentiels, aux résultats et aux processus sous-jacents. En général, nous accordons plus de crédibilité à l'expertise acquise en recherche ou à titre de professionnel de la santé (Richards et al, 2023). Or, cela peut mener à des biais inconscients de la part des chercheurs, faisant obstacle à l'écoute et à une participation véritable des patients partenaires.…”

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

“…In other terms, guarantee a good representativeness of patients engaged in research means guarantee equal access to all the different illness experiences which may be relevant for the purposes of the engagement activity itself. In their article, Richards et al [1] highlighted tokenism and lack of recognition of the vulnerability of patient partners among the main errors that must be avoided to ensure meaningful patient engagement. As described in this contribution, we believe that ensuring patient representativeness clearly falls within the governance aspects that will help address the above challenges and provide content of validity (and clinical soundness) to a more rigorous science of patients' engagement.…”

“…Author details 1 Italian Multiple Sclerosis Society Foundation, Genoa, Italy. 2 Institute for Health Care Policy, KU Louvain, Leuven, Belgium.…”