评论"患者伙伴对患者参与的反思:它是如何出错的"
Paola Zaratin1, Usman Khan2, Guendalina Graffigna3
1Italian Multiple Sclerosis Society Foundation, Genoa, Italy. paola.zaratin@aism.it.
Research involvement and engagement
|December 22, 2023
概括
重新思考"专家患者"在研究中的作用至关重要. 代表性患者参与,而不仅仅是"专家患者",防止了代币主义,并确保了真正的患者合作伙伴参与研究创新.
科学领域:
- 公共卫生 公共卫生
- 研究创新治理研究治理
- 患者参与心理学 患者参与心理学
背景情况:
- 研究中的"专家患者"模式可以导致标志性参与.
- 缺乏代表性的患者治理导致"患者参与失误".
- 患者伴侣的脆弱性在当前的模型中往往没有被识别.
研究的目的:
- 激发关于重新思考"专家患者"概念的讨论.
- 为更有效和更道德的患者参与提出解决方案.
- 为应对负责任的研究创新 (RRI) 治理方面的挑战.
主要方法:
- 分析"专家患者"在研究参与中的局限性.
- 讨论患者参与的治理模式.
- 突出了RRI的MULTI-ACT模型.
主要成果:
- "专家患者"的方法可能导致代币主义和未能认识到患者的脆弱性.
- 缺乏代表性的患者治理,会破坏真正的参与.
- 多行为模型为改善RRI提供了一个潜在的框架.
结论:
- 从"专家患者"转向代表性患者参与至关重要.
- 需要有效的治理模型来防止患者参与的代币化.
- 负责任的研究创新需要包容和道德的患者参与策略.
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