A Systematic Review of Patient Engagement Experiences in Brain Disorders

Bertorello, Deborah; Brichetto, Giampaolo; Folkvord, Frans; Alexandra, Theben; Zaratin, Paola

doi:10.2147/prom.s256396

Cited by 1 publication

(1 citation statement)

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“…The term "expert patient" has a long history in health care [2,3], and over the past decade, it has emerged as an important way to help improve the relevance, quality, and impact of clinical research. Indeed, much of the current guidelines for patient engagement focus on enabling "expert patients" in the "medicine life cycle" [4]. In our experience, the individual contribution of a single expert patient, although trained [5], does not represent the collective contribution of the relevant community from research to care (regardless of whether treatments, medical devices, or other sectors are being discussed).…”

Section: Addressing Takeaway Action For Readers From the Canadian Pap...mentioning

confidence: 99%

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

Zaratin,

Khan,

Graffigna

2023

Res Involv Engagem

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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 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.

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Section: Addressing Takeaway Action For Readers From the Canadian Pap...mentioning

confidence: 99%