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在复杂慢性病背景下作为知识伙伴的患者

Patients as knowledge partners in the context of complex chronic conditions.

作者信息

Hsu Vox Jo, Moodie Megan, Dumes Abigail A, Rogers Emily Lim, Carter Chelsey, Broder Emma, Couture Daisy, Löwy Ilana, Mendenhall Emily

机构信息

The University of Texas at Austin, Austin, Texas, USA.

University of California Santa Cruz, Santa Cruz, California, USA.

出版信息

Med Humanit. 2025 Feb 24;51(1):34-38. doi: 10.1136/medhum-2024-012957.

Abstract

This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient knowledge is often undervalued, even when clinicians have limited training in diagnosing and treating a particular condition. Despite growing acknowledgement of the importance of patients as 'stakeholders', clinicians and medical researchers have yet to fully develop ways to evaluate and, when appropriate, meaningfully incorporate patient knowledge-experiential, scientific, social scientific, historical or otherwise-into clinical practice and research. We argue that there are opportunities for clinicians and researchers to collaborate with patients and colleagues from the social sciences and humanities. We use two examples to demonstrate why patient knowledge should inform medical engagement with chronic and complex conditions. The first comes from a disability studies scholar who describes the social biases that can sideline patient expertise, and the second is from an anthropologist whose reading in medical humanities led to an effective treatment for her recovery. Rather than merely acknowledging 'lived experience', clinical and research teams should include patients with complex chronic conditions as 'knowledge partners'. These patients occupy unique and valuable epistemological positions, and their knowledge should be considered with as much openness and rigour as other forms of medical knowledge. As more medical schools, residency programmes and hospitals emphasise the need for 'deep listening' and patient input, we encourage meaningful engagement with patients whose insights can provide crucial knowledge for clinical and scientific advancement.

摘要

本文阐述了认真对待患者知识如何能够改善患者体验并推动医学科学发展。在与感染相关的慢性病和其他复杂慢性病相关的临床环境中,患者知识常常被低估,即便临床医生在诊断和治疗特定病症方面的培训有限。尽管越来越多的人认识到患者作为“利益相关者”的重要性,但临床医生和医学研究人员尚未充分开发出评估方法,也未能在适当的时候将患者知识——经验性、科学性、社会科学性、历史性或其他方面的知识——有意义地纳入临床实践和研究。我们认为,临床医生和研究人员有机会与患者以及社会科学和人文学科的同事开展合作。我们用两个例子来说明为什么患者知识应该为应对慢性和复杂病症的医疗活动提供信息。第一个例子来自一位残疾研究学者,他描述了可能使患者专业知识被边缘化的社会偏见,第二个例子来自一位人类学家,她对医学人文学科的研读促成了她康复的有效治疗方法。临床和研究团队不应仅仅承认“生活经验”,而应将患有复杂慢性病的患者视为“知识伙伴”。这些患者占据着独特且有价值的认识论地位,他们的知识应像其他形式的医学知识一样,以开放和严谨的态度加以考量。随着越来越多的医学院校、住院医师培训项目和医院强调“深度倾听”和患者意见的必要性,我们鼓励与患者进行有意义的互动,他们的见解可为临床和科学进步提供关键知识。

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