McGill University, Montréal, Quebec, Canada.
Perm J. 2020 Dec;24:1-3. doi: 10.7812/TPP/20.006.
The label of "patient-partner" is widely used when referring to a person living with a specific health condition that participates in research teams or consults on clinical practice guidelines. However, being a patient-partner says nothing about one's potential role outside a biomedical context. Labeling a person as such can be detrimental to their perception of themselves. The intention of this paper is to provide a philosophical conceptual framework to understand the complexities and consequences of labeling people as patients outside of direct healthcare. A philosophical hermeneutic approach was used to explore how labeling and self-stereotyping can affect the patient-partner, leading to the possible erosion of their personhood. The authors suggest that research teams instead employ the more accurate and dignified term, "patient perspective consultant." Accurate titles allow team members to relate to each other, leaving room for everyone to contribute meaningfully. The shift from patient-partner to patient perspective consultant does not change the nature of the role. It clarifies the context through increased accuracy, and adds dignity and purpose.
当提到与特定健康状况共同生活并参与研究团队或咨询临床实践指南的人时,广泛使用“患者伙伴”这一标签。然而,作为患者伙伴并不能说明其在生物医学背景之外的潜在角色。将人贴上这样的标签可能会损害他们对自己的认知。本文的目的是提供一个哲学概念框架,以理解在直接医疗保健之外将人标记为患者的复杂性和后果。采用哲学诠释学方法来探讨标签和自我刻板印象如何影响患者伙伴,导致其人格可能受到侵蚀。作者建议研究团队改用更准确和有尊严的术语,即“患者视角顾问”。准确的称谓可以让团队成员相互关联,为每个人都能有意义地做出贡献留出空间。从患者伙伴到患者视角顾问的转变并没有改变角色的性质。它通过提高准确性来澄清背景,并增加尊严和目的。