Narrating Autoimmunity through Biographies of Illness, Narrative Medicine, and Treatment

这个项目的重点是医疗从业者和患者如何共同产生关于自身免疫及其治疗的知识。这项研究着眼于自身免疫的组织隐喻如何理解身体及其过程。它将通过观察患者和慢性病患者社区如何沟通，探索自身免疫是如何通过患者社区和功能医学中的替代实践积极概念化的。这项研究将引起医学研究人员、卫生保健工作者、患者及其家人的兴趣。这个项目的目标是了解患者-从业者如何共同创造知识，特别是通过从业者对患者叙述和传记的关注，来解决这些作为疾病媒介的问题。这项研究使用医学人类学的方法来理解功能医学--一种治疗自身免疫性疾病的综合方法--可能会成为一种模式。在团契期间，国际医学会将通过对患者和从业者的个人访谈和对在线疾病社区的观察，对个人对自身免疫性疾病的主观叙述进行民族志研究。这项研究通过一种科学和技术研究的方法来框架这些叙述，以分析形成医学和流行概念的社会和文化因素，这些概念允许患者和从业者将社会排斥的经历与标记为“自身免疫”的症状联系起来。除了STS和医学人类学的特定领域，该项目将有助于为未来旨在促进个性化和叙事性医疗实践的项目提供信息。该奖项反映了NSF的法定使命，并通过使用基金会的智力优势和更广泛的影响审查标准进行评估，被认为值得支持。

This project focuses on how healthcare practitioners and patients coproduce knowledge about autoimmunity and its treatment. This study looks at how the organizing metaphor of autoimmunity understanding of the body and its processes. It will explore how autoimmunity is being actively conceptualized through patient communities and alternative practice in functional medicine by looking at how patients and patient communities with chronic conditions communicate. This study will be of interest to medical researchers, health care workers, patients and their families. The goal of this project is to understand how patient-practitioner co-production of knowledge, specifically through practitioner attention to patient narrative and biography, to address these as vectors of illness. This research uses methods from medical anthropology to understand how functional medicine, an integrative approach to autoimmune disease, might serve as a model. During the fellowship period, the PI will conduct ethnographic study of individual subjective narratives of autoimmune disease through individual interviews with patients and practitioners and observation of online communities of illness. The study frames these narratives through a science and technology studies approach to analyze the social and cultural factors shaping the medical and popular concepts that allow patients and practitioners to link experience of social exclusion to symptoms marked as “autoimmune.” Beyond the specific fields of STS and medical anthropology, this project will help inform future projects that aim to advance personalized and narrative healthcare practice.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.