通过患者咨询委员会运行患者参与原则:教训和建议
Ingrid Nielssen1,2, Maria Santana1,2, Surakshya Pokharel2,3
1Strategy for Patient Oriented Research (SPOR) Support Unit, Edmonton, Alberta, Canada.
概括
建立患者咨询委员会 (PAC) 实现了患者参与的关键原则,为研究设计和成果做出了重大贡献. 这种方法促进了相互尊重和共同建立有意义的患者参与.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 患者参与到研究中.
- 定性研究方法 定性研究方法
背景情况:
- 以患者为导向的研究战略 (SPOR) 强调包容性,支持,相互尊重和共同构建作为核心患者参与原则.
- 运用这些原则对于有效的患者参与研究研究至关重要.
研究的目的:
- 描述为"重新定制例行实验室测试 (RePORT) "研究的患者咨询委员会 (PAC) 的创建和运行情况.
- 展示如何通过PAC实现患者参与的四大支柱.
主要方法:
- 与阿尔伯塔州运动支持单位 (AbSPORU) 的患者参与团队合作,形成一个多元化的PAC.
- 蓄意招聘,确保多种视角和经验.
- 每月的PAC会议,培训,支持和针对患者研究合作伙伴的定制补偿,包括联合主席角色.
主要成果:
- 该PAC由9-11名患者合作伙伴和研究小组成员组成,每月举行12次会议.
- PAC的贡献显著影响了研究设计,目标,招聘材料和数据分析编码.
- 患者的合作伙伴感到有价值,多样性增强了参与者访问,共同设计产生了丰富的研究成果.
结论:
- 通过研究团队和患者参与团队之间的合作,可以通过PAC促进有效的患者参与.
- 有意识和灵活的战略对于管理PAC至关重要,以创造包容性,支持,相互尊重和共同建设的环境.
- 有意义的患者参与导致了更好的研究设计和结果.
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