与 Sarcoidosis 患者合作,实施社区咨询委员会
Leila Bushweller1, Sandra Hodges2, Linda Meyer2
1Cleveland Clinic Lerner College of Medicine, Cleveland, OH.
Chest
|February 18, 2024
概括
在罕见的肺病中,社区咨询委员会 (CAB) 最好以明确的指导方针和专门的协调员组成. 患者的意见是改善临床护理和研究的关键,避免过度学术项目和数字依赖.
科学领域:
- 以患者为中心的研究.
- 罕见的肺部疾病 罕见的肺部疾病
- 社区的参与 社区的参与
背景情况:
- 社区咨询委员会 (CAB) 将患者的经验纳入临床研究.
- 有效的CAB将社区成员作为平等的合作伙伴.
- 对患者对罕见肺病CAB最佳实践的观点的理解有限.
研究的目的:
- 探讨CAB成员关于在罕见肺病中形成和维持CAB的最佳实践的观点.
主要方法:
- 克利夫兰诊所 Sarcoidosis健康合作伙伴 (CC-HP) CAB在2021年8月成立.
- 与患者成员合作评估CAB形成和维护过程.
- 通过反思/汇报讨论来发展障碍和促进者的共识.
主要成果:
- 发表的指导方针有助于在罕见的肺部疾病中形成CAB.
- 促进者包括一个专门的协调员,合作项目,并专注于改善临床护理.
- 障碍包括正式结构,学术专注于患者影响以及过度使用数字资源.
结论:
- 将CAB评估集中在社区成员的经验上,可以识别促进者和障碍者.
- 这种方法增强了罕见肺部疾病的CAB过程.
- 患者的意见对于有效的临床实践和研究改进至关重要.
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