当前位置: X-MOL 学术Res. Involv. Engagem. › 论文详情
Our official English website, www.x-mol.net, welcomes your feedback! (Note: you will need to create a separate account there.)
Keeping it credible in cohort multiple Randomised Controlled Trials: the Community Ageing Research 75+ (CARE 75+) study model of patient and public involvement and engagement.
Research Involvement and Engagement Pub Date : 2016-08-30 , DOI: 10.1186/s40900-016-0044-9
Anne Heaven 1 , Lesley Brown 1 , Marilyn Foster 1 , Andrew Clegg 1
Affiliation  

PLAIN ENGLISH SUMMARY There are well documented benefits to involving patients and the public in research. However, there is little research published about their involvement in large complex studies such as cohort multiple Randomised Controlled Trials (cmRCTs). The cmRCT method establishes a group of participants, with a common characteristic (e.g. older people) who will be followed over a number of years. Other (sub) studies can also recruit from this pool of people. This method offers researchers many advantages, including being able to recruit from more hard to reach groups. However, cmRCTs also have features which can make it more complicated to involve patients and the public. For example more than one study may take place at the same time; studies may be spread out over a large geographical area and they may include a wide range of topics. In spite of these difficulties we have developed a way of working with patients, the public and researchers that provides stability over time but allows flexibility along the way. Our model of working has saved us time and money; helped us to recruit more widely, and enabled us to focus our research in areas that are important to older people with frailty. ABSTRACT Background There is increasing guidance on how to make the most of the rich seam of data provided by large cohort studies, and growing recognition of the benefits of cohort multiple Randomised Controlled Trials (cmRCT) in health research. In contrast, there is a lack of discussion about patient and public involvement and engagement (PPIE) in these large and complex research infrastructures. Our aim was to create a structure to enable meaningful, sustainable public involvement within the cmRCT framework. We have established a core reference group of four key individuals with extensive links to other relevant local community structures and individuals. Results Using the CARE 75+ model we have engaged with a wide variety of patients and the public in a relatively short space of time. Activities have included scrutiny of protocols and assessment tools, and process evaluations; resulting in system efficiencies, increased recruitment and a more focused research agenda. Conclusions There is a need for strong public oversight and flexible models of PPIE in cmRCTs. The model of PPIE developed in the Community Ageing Research 75+ study presents one potential way to foster expertise and enable diversity.

中文翻译:

在队列的多个随机对照试验中保持可信度:患者和公众参与和参与的社区老龄化研究75+(CARE 75+)研究模型。

普通英语摘要使患者和公众参与研究有很多有据可查的好处。但是,关于它们参与大型复杂研究(例如队列多项随机对照试验(cmRCT))的研究很少发表。cmRCT方法建立了一组参与者,这些参与者具有共同的特征(例如,老年人),将在很多年后对其进行跟踪。其他(子)研究也可以从这群人中招募。这种方法为研究人员提供了许多优势,包括能够从难以接触的群体中招募人员。但是,cmRCT还具有使患者和公众参与更为复杂的功能。例如,可能同时进行一项以上的研究;研究可能分布在一个较大的地理区域,并且可能包含广泛的主题。尽管存在这些困难,我们仍开发了一种与患者,公众和研究人员合作的方法,该方法可以随着时间的推移提供稳定性,但在整个过程中都具有灵活性。我们的工作模式为我们节省了时间和金钱。帮助我们扩大了招募范围,使我们能够将研究重点放在对年老体弱的人重要的领域。摘要背景关于如何充分利用大型队列研究提供的丰富数据的指导正在不断增加,并且人们越来越多地认识到队列多项随机对照试验(cmRCT)在健康研究中的优势。相反,在这些庞大而复杂的研究基础架构中,缺乏关于患者和公众参与与参与(PPIE)的讨论。我们的目标是创建一种结构,以实现有意义的,cmRCT框架内可持续的公众参与。我们已经建立了一个由四个关键人物组成的核心参考小组,这些参考人物与其他相关的当地社区结构和人物有着广泛的联系。结果使用CARE 75+模型,我们在较短的时间内就与众多患者和公众进行了接触。活动包括审查方案和评估工具以及过程评估;从而提高了系统效率,增加了招募人数,并使研究议程更具针对性。结论cmRCT中需要强有力的公众监督和PPIE的灵活模型。在社区老龄化研究75+研究中开发的PPIE模型提出了一种培养专业知识和实现多样性的潜在方法。我们已经建立了一个由四个关键人物组成的核心参考小组,这些参考人物与其他相关的当地社区结构和人物有着广泛的联系。结果使用CARE 75+模型,我们在较短的时间内就与众多患者和公众进行了接触。活动包括审查方案和评估工具以及过程评估;从而提高了系统效率,增加了招募人数,并使研究议程更具针对性。结论cmRCT中需要强有力的公众监督和PPIE的灵活模型。在社区老龄化研究75+研究中开发的PPIE模型提出了一种培养专业知识和实现多样性的潜在方法。我们已经建立了一个由四个关键人物组成的核心参考小组,这些参考人物与其他相关的当地社区结构和人物有着广泛的联系。结果使用CARE 75+模型,我们在较短的时间内就与众多患者和公众进行了接触。活动包括审查方案和评估工具以及过程评估;从而提高了系统效率,增加了招募人数,并使研究议程更具针对性。结论cmRCT中需要强有力的公众监督和PPIE的灵活模型。在社区老龄化研究75+研究中开发的PPIE模型提出了一种培养专业知识和实现多样性的潜在方法。结果使用CARE 75+模型,我们在较短的时间内就与众多患者和公众进行了接触。活动包括审查方案和评估工具以及过程评估;从而提高了系统效率,增加了招募人数,并使研究议程更具针对性。结论cmRCT中需要强有力的公众监督和PPIE的灵活模型。在社区老龄化研究75+研究中开发的PPIE模型提出了一种培养专业知识和实现多样性的潜在方法。结果使用CARE 75+模型,我们在较短的时间内就与众多患者和公众进行了接触。活动包括审查方案和评估工具以及过程评估;从而提高了系统效率,增加了招募人数,并使研究议程更具针对性。结论cmRCT中需要强有力的公众监督和PPIE的灵活模型。在社区老龄化研究75+研究中开发的PPIE模型提出了一种培养专业知识和实现多样性的潜在方法。结论cmRCT中需要强有力的公众监督和PPIE的灵活模型。在社区老龄化研究75+研究中开发的PPIE模型提出了一种培养专业知识和实现多样性的潜在方法。结论cmRCT中需要强有力的公众监督和PPIE的灵活模型。在社区老龄化研究75+研究中开发的PPIE模型提出了一种培养专业知识和实现多样性的潜在方法。
更新日期:2019-11-01
down
wechat
bug