Patient-led research and displacements of biomedical knowledge production, distribution, and consumption.

IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Health Pub Date : 2024-04-26 DOI:10.1177/13634593241249096
Dixi Louise Strand, Mari Holen
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Abstract

Patient and Public Involvement in Research (PPIR) has become an increasingly prevalent and integral part of biomedical research. In this paper, we focus on patient-led research, taking as our case the construction of new biomedical knowledge regarding the rare disease ADNP syndrome. Specifically, we seek to understand how concepts of experiential knowledge and lay expertise become integral to rather than separate from scientific expertise. In the case of ADNP, the parent-led research "mimes" biomedical knowledge practices in a way that, on the one hand, enhances the legitimacy of science and scientific expertise, and on the other displaces and transforms science by the fact that other knowledge agents (patients, next-of-kin) enter these practices.

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患者主导的研究与生物医学知识的生产、传播和消费的位移。
患者和公众参与研究(PPIR)已成为生物医学研究中日益普遍和不可或缺的一部分。在本文中,我们以构建有关罕见疾病 ADNP 综合征的新生物医学知识为案例,重点讨论患者主导的研究。具体而言,我们试图了解经验知识和非专业知识的概念如何成为科学专业知识的组成部分,而不是与之分离。就 ADNP 而言,家长主导的研究 "模拟 "了生物医学知识的实践,一方面增强了科学和科学专业知识的合法性,另一方面,其他知识主体(患者、近亲)也参与了这些实践,从而取代并改变了科学。
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来源期刊
Health
Health Multiple-
CiteScore
4.90
自引率
0.00%
发文量
0
期刊介绍: Health: is published four times per year and attempts in each number to offer a mix of articles that inform or that provoke debate. The readership of the journal is wide and drawn from different disciplines and from workers both inside and outside the health care professions. Widely abstracted, Health: ensures authors an extensive and informed readership for their work. It also seeks to offer authors as short a delay as possible between submission and publication. Most articles are reviewed within 4-6 weeks of submission and those accepted are published within a year of that decision.
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