Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes
Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes
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DOI：
10.1177/1471301218789307
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发表时间：
2018-11-01
影响因子：
2.4
通讯作者：
Milne, Richard
中科院分区：
文献类型：
--
作者：
Gregory, Sarah;Wells, Katie;Milne, Richard
尽管公众和患者参与生物医学研究的重要性日益增加，但研究参与者本身的重要作用却相对较少受到关注。我们在本文中的目的是探讨研究参与者参与的影响，在预防和欧洲预防阿尔茨海默氏症痴呆症（EPAD）项目。方法在本文中，我们报告的经验，涉及研究参与者作为合作者在前瞻性队列研究探索早期变化的大脑的途径和风险痴呆症。我们使用会议记录和专家组成员和指导委员会的反馈，以了解经验和对研究的影响。结果我们描述的目的和结构的参与者小组内建立的预防痴呆症的研究，并强调其贡献的组织，进行和未来的研究。确定的关键贡献领域包括招募，纳入额外的子研究，了解参与者的经验，并为研究的未来做出贡献。讨论然后，我们描述了如何预防痴呆症小组的形式参与EPAD项目的基础。
Aim Despite the growing importance of public and patient involvement in biomedical research, comparatively little attention has been paid to the important role of research participants themselves. Our aim in this paper is to explore the impact research participant involvement has within the PREVENT and the European Prevention of Alzheimer's Dementia (EPAD) projects. Method In this paper, we report the experiences of involving research participants as collaborators in prospective cohort studies exploring early changes in the brain as pathways towards and risks for dementia. We use minutes and feedback from members of the panel and steering committee to understand the experience and impact on the study. Results We describe the aims and structure of the participant panel established within the PREVENT Dementia study and highlight its contributions to the organisation, conduct and future of the study. Key areas of contribution identified include recruitment, inclusion of additional sub-studies, understanding the participant experience and contributing to the future of the study. Discussion We then describe how the PREVENT Dementia panel forms the basis for participant involvement within EPAD project.