患者和利益相关者合作研究:开发一个社区脏病学和移植研究咨询委员会
Nidhi Ghildayal1, Jennifer Scherer2, Akanksha Nalatwad1
1Department of Surgery, NYU Grossman School of Medicine and NYU Langone Health, New York, NY.
Kidney medicine
|October 6, 2025
概括
建立一个社区咨询委员会,通过结合不同患者和护理人员的观点,改善了科/移植研究. 这种合作增强了研究的相关性和对病最受影响的人的影响.
科学领域:
- 腎臟病學 (nephrology) 是一種醫學專業.
- 移植研究 移植研究
- 社区参与 社区参与
背景情况:
- 在科/移植研究中引发社区观点面临诸多挑战,包括患者招募,与边缘化群体的信任问题以及由于高护理负担而导致成员保留.
- 历史上的伤害和医疗保健障碍导致边缘化群体对研究环境缺乏信任.
研究的目的:
- 为了应对社区参与的挑战,这项研究旨在组建和实施一个社区咨询委员会 (CAB) 脏病/移植研究.
- 目标是通过将生活经验和社区观点整合到研究过程中来改善研究.
主要方法:
- 一个多元化的CAB由9名成员组成,包括慢性病患者,末期病患者,移植接受者,护理人员和捐赠者.
- 合作涉及病社区组织,优先考虑招聘多样性和公平性.
- 在四个季度会议上,CAB对5个研究建议提供了反.
主要成果:
- CAB成功地弥合了研究人员和社区之间的沟通差距.
- 来自CAB的反改善了科/移植研究,以更好地反映受影响最严重的人的观点.
- 八名成员保持活跃超过一年,表明成功的参与和保留.
结论:
- 形成科/移植 CAB 是一个可行的策略,以提高研究的影响和相关性.
- 社区咨询委员会促进了生活经验的整合,导致了更加以患者为中心的研究.
- 该过程强调了社区投入在扩大病和移植研究影响方面的好处.
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