Consumer involvement in health research: a UK scoping and survey
Consumer involvement in health research: a UK scoping and survey
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DOI：
10.1111/ijcs.12072
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发表时间：
2014-01-01
影响因子：
9.9
通讯作者：
Goodman, Claire
中科院分区：
文献类型：
--
作者：
Mathie, Elspeth;Wilson, Patricia;Goodman, Claire
消费者参与或患者和公众参与（PPI）是英国的一项政策，也是许多资助者的先决条件。研究中的PPI被定义为与公众（或服务用户）一起进行或由公众（或服务用户）进行的研究，而不是将患者和公众作为受试者或参与者的研究。尽管有明确的政策驱动因素，但关于用户参与研究的程度、过程和影响的经验证据相对较少。本文旨在通过提供当前趋势和影响的关键概述，为PPI研究提供国际证据基础。为了了解PPI在研究中的当前程度和变化，对选定的英国研究进行了范围界定和调查。选择了六个研究主题领域（囊性纤维化、糖尿病、关节炎、痴呆、智力和发育障碍以及公共卫生），以确保研究中的一系列设计、研究人群和PPI历史。共联系了838项研究（非商业研究，且不超过2年）。范围界定的答复率为38%，调查的答复率为28%。在范围内，51%的研究有PPI的一些证据，在调查中为79%。最常见的PPI活动是指导委员会成员资格和审查患者信息传单。似乎有一些模糊的角色与患者作为研究对象参与，以及执行患者参与的角色。一个主要的发现是在公开的研究文件中关于PPI的可用信息数量有限。我们认为，这种类型的参与和缺乏常规收集的信息PPI的结果在缺乏共同的理解，什么最佳的PPI在研究中应该看起来像，与实践的重要影响的无形性。此外，如果没有一个框架来审查生产者价格指数，就很难知道生产者价格指数的不同方法是否对研究的关键成果产生不同的影响。
Consumer involvement or patient and public involvement (PPI) in health research is a UK policy imperative and a prerequisite for many funders. PPI in research is defined as research carried out with or being carried out by the public (or service users), rather than research on patients and public as subjects or participants. Despite the clear policy driver, there is relatively little empirical evidence on the extent, processes and impact of user involvement in research. This paper aims to add to the international evidence base on PPI in research by providing a key overview of current trends and impacts. In order to understand the current extent and variation of PPI in research, a scoping exercise and survey were carried out on selected UK studies. Six research topic areas (cystic fibrosis, diabetes, arthritis, dementia, intellectual and developmental disabilities, and public health) were selected to ensure a range of designs, study populations and histories of PPI in research. A total of 838 studies (non-commercial studies and not older than 2 years) were contacted. The response rate for the scoping was 38% and the survey 28%. In the scoping, 51% of studies had some evidence of PPI and in the survey 79%. The most common PPI activity was steering committee membership and reviewing patient information leaflets. There appeared to be some blurred roles with patients participating as research subjects as well as carrying out patient involvement roles. A major finding was the limited amount of available information about PPI in publicly accessible research documents. We suggest that the invisibility of this type of involvement and the lack of routinely collected information about PPI results in a lack of shared understanding of what optimal PPI in a study should look like, with important implications for practice. Furthermore, without a framework to review PPI it is difficult to know if different approaches to PPI have a different impact on key outcomes of the research.