公众和参与者参与作为包容性痴呆症研究的途径
Sarah Walter1, RÍona McArdle2, Emily A Largent3
1Alzheimer's Therapeutic Research Institute, University of Southern California, San Diego, California, USA.
Alzheimer's & dementia : the journal of the Alzheimer's Association
|November 14, 2024
概括
公众和参与者参与 (PPI) 对于包容性阿尔茨海默病和相关痴呆症 (ADRD) 研究至关重要. 社区的参与确保了研究的优先事项和成果有利于那些受痴呆症影响最严重的人.
科学领域:
- 神经科学是一个神经科学.
- 公共卫生 公共卫生
- 卫生政策 卫生政策
背景情况:
- 阿尔茨海默病和相关痴呆症 (ADRD) 研究需要更大的包容性.
- 痴呆症患者所面临的差异包括年龄歧视,耻辱和歧视.
- 公众和参与者参与 (PPI) 可以提高研究质量和相关性.
研究的目的:
- 为痴呆症研究人员提供有效应用PPI的证据.
- 突出ADRD包容性研究的重要性.
- 为建立公平的研究人员-社区伙伴关系提供建议.
主要方法:
- 在ADRD研究中审查现有文献和PPI的例子.
- 对影响痴呆症患者差异的分析.
- 制定实施PPI的建议.
主要成果:
- PPI可以改善整个生命周期的研究,从主题定义到政策翻译.
- 公平的伙伴关系需要承认和解决诸如年龄歧视和歧视之类的社会偏见.
- 成功的PPI涉及选择,尊重,共享决策,访问,包容和代表.
结论:
- 早期和持续的PPI对于有影响力的ADRD研究至关重要.
- 研究人员必须与社区成员建立合作关系.
- 分享PPI的影响对于其持续融入研究实践至关重要.
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