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一个席位在桌子上,但是在谁的条件下? 有意义的订婚的幻觉
Mark Thomaz Ugliara Barone1, Emma Klatman2
1Intersectoral Forum of NCCs/NCDs in Brazil (ForumCCNTs), São Paulo, SP, Brazil.
Journal of patient experience
|November 10, 2025
概括
患有健康状况的人的有意义的参与至关重要,但由于代币主义,往往不足. 真正的伙伴关系需要整合生活经验,公平的报酬和以人为中心的系统的资源.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 患者参与 患者参与
- 全球卫生平等全球卫生平等
背景情况:
- 具有实践健康经验的个人的有意义的参与对于公平的医疗保健,研究和政策至关重要.
- 尽管有促进参与的框架,但代币主义和表演性包容性在全球范围内仍然存在.
- 拥有实践经验的贡献者经常面临边缘化,被拒绝补偿和不平等的待遇,破坏了真正的伙伴关系.
研究的目的:
- 分析令牌主义对健康状况不佳的人参与的持续挑战.
- 倡导不可谈判的原则,以实现超越象征性姿态的真实伙伴关系.
- 强调在卫生系统中真正的共同领导的伦理和实际必要性.
主要方法:
- 对医疗保健,研究和政策贡献者的生活经验进行定性分析.
- 审查有关患者参与的现有框架和全球卫生决议.
- 基于作者作为生活经验贡献者的经验的争议.
主要成果:
- 生活经验贡献者报告感到边缘化,表明表现性包容性而不是共享领导力.
- 拒绝赔偿,劣质住宿和不平等待遇的情况凸显了缺乏尊重的现象.
- "没有我们就没有我们"的原则在关键的全球卫生决议中经常缺席.
结论:
- 真正有意义的参与需要在决策过程中实质性地整合生活经验.
- 公平的补偿和资源平价是真正伙伴关系的不可谈判的基本原则.
- 超越符号主义对于建立信任和实现以人为中心的卫生系统至关重要.
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