患者参与研究:从CAPTURE ALS学到的经验教训,这是一项纵向观察性ALS研究
Shelagh K Genuis1, Westerly Luth1, Claire Magnussen2
1Division of Neurology, Department of Medicine, University of Alberta, Edmonton, AB, Canada.
Amyotrophic lateral sclerosis & frontotemporal degeneration
|March 23, 2024
概括
患者参与研究 (PEIR) 是至关重要的,Capture ALS研究通过各种举措证明了其有效性. 有意义的PEIR导致了宣传和赋权,突出了未来研究的最佳实践.
科学领域:
- 患者和公众参与研究.
- 医疗保健服务研究 医疗服务研究
- 纵向观测研究 纵向观测研究
背景情况:
- 患者参与研究 (PEIR) 在伦理和实践上都很重要,但最佳实践的证据有限.
- CAPTURE ALS研究旨在研究PEIR在纵向观测环境中的实施.
研究的目的:
- 在CAPTURE ALS研究中实施的调查患者参与研究 (PEIR).
- 在现实研究环境中确定PEIR倡议的最佳实践和经验教训.
主要方法:
- 利用了三个参与计划:社区写信,患者/护理人员焦点小组和参与者合作伙伴咨询委员会 (PPAC).
- 从研究文档中采用了追溯数据分析.
- 应用国际公众参与协会 (IAP2) 频谱作为评估参与水平的框架.
主要成果:
- 一个社区写信活动产生了2401封信,倡导研究目标和资金.
- 焦点小组的反影响了研究设计和数据共享计划.
- PPAC的合作塑造了治理,协议,沟通和参与活动,涵盖了所有IAP2参与水平.
结论:
- 有意义的PEIR倡议极大地影响了CAPTURE ALS研究.
- 关键的教训包括PEIR的早期嵌入,关系建设,灵活性和寻求多样性.
- 挑战涉及到资金,维持关系的时间和参与者 attrition;然而,通过宣传授权是显而易见的.
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