与患者合作伙伴一起推进研究:为健康研究中的有效合作提供下一代最佳实践
Ally C Farrell1, Jessica A Lawson1, Ovarian Cancer Canada's Patient Partners In Research Team1
1Ovarian Cancer Canada, 316-4211 Yonge St., Toronto, ON M2P 2A9, Canada.
Current oncology (Toronto, Ont.)
|November 26, 2024
概括
卵巢癌加拿大为患者研究人员伙伴关系制定了最佳实践,以提高卵巢癌 (OC) 研究的相关性. 这些由研究人员反验证的指导方针旨在改善罕见病研究中的合作和影响.
科学领域:
- 在瘤学瘤学.
- 患者参与 患者参与
- 卫生研究方法论 卫生研究方法论
背景情况:
- 加拿大的卵巢癌 (OC) 研究面临挑战,因为它不那么常见,但具有重大意义.
- 加拿大卵巢癌的研究患者合作伙伴 (PPiR) 计划将有过卵巢癌经验的个人与研究联系起来.
- 由于对患者参与研究的需求日益增加,因此需要一个正式的框架.
研究的目的:
- 共同开发和提出"最佳实践"的框架,以便在OC研究中建立有效的研究人员-患者伙伴关系.
- 为了应对参与患者合作伙伴在罕见和致命疾病的研究环境中的挑战.
- 将加拿大卵巢癌对患者参与研究的方法正式化.
主要方法:
- 与PPiR团队共同开发一个最佳实践框架.
- 确定五个关键的最佳实践:尽早开始,促进合作,建立期望,报告影响,确保资源.
- 通过对加拿大OC研究人员进行匿名调查收集数据,以了解患者参与的好处.
主要成果:
- 建立了一个研究人员与患者伙伴关系的五种最佳实践框架.
- 研究人员调查数据表明,随着时间的推移,患者参与的感知好处明显改善.
- 通过调查结果验证了所介绍的最佳实践.
结论:
- 开发的最佳实践增强了OC研究的临床相关性和现实影响.
- 该框架为患者参与健康研究提供了一个有价值的模型,可以适应类似的具有挑战性的环境.
- 需要继续努力,以应对在研究中患者参与方面的持续挑战.
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