罕见和复杂的类风湿病患者伙伴关系模式:欧洲参考网络ReCONNET的研究及其他领域
Jeanette Andersen1, Rosaria Talaric2, Diana Marinello2
1Lupus Europe, Brussels, Belgium.
The Lancet. Rheumatology
|January 24, 2026
概括
在罕见的结缔组织疾病中,患者合作改善了护理和研究. 欧洲参考网络 (ERN) ReCONNET 欧洲参考网络
科学领域:
- 类风湿病学 类风湿病学
- 罕见疾病 罕见疾病
- 以患者为中心的护理
背景情况:
- 罕见和复杂的结缔组织疾病面临的挑战包括诊断延迟和分散的护理.
- 患者伙伴关系对于解决这些未满足的需求和推进研究至关重要.
- 欧洲参考网络 (ERN) ReCONNET专注于罕见和复杂的结缔组织疾病.
研究的目的:
- 介绍ERN ReCONNET实施的患者伙伴关系的结构化和可转移模型.
- 展示患者参与如何增强研究,护理开发和战略规划.
- 促进罕见病医疗保健系统的以患者为中心的创新.
主要方法:
- ERN ReCONNET通过治理结构和共享决策制度化了患者伙伴关系.
- 患者参与了研究和护理开发的所有阶段.
- 该模型与曾经有过体验的患者共同开发.
主要成果:
- 患者伙伴关系显著提高了医疗保健活动的相关性,质量和影响.
- 患者有助于确定未满足的需求,并共同撰写科学出版物.
- 患者的投入塑造了网络内的教育举措和战略规划.
结论:
- ERN ReCONNET的患者伙伴关系模式是有效的,可以应用于其他罕见疾病和类风湿病.
- 将患者参与作为平等的利益相关者制度化,促进以患者为中心的创新.
- 这种方法可以改善罕见和复杂的结缔组织疾病患者的治疗结果.
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