背景:在研究中使用患者和公众参与(PPI)来提高医疗保健质量的兴趣越来越大。通常,传统的方法已经被使用,如访谈或焦点小组。然而,这些方法往往会吸引类似的人群。因此,正在开发创造性的方法,使传统方法无法获得或无法参与的患者参与其中。
目的:确定在健康和社会护理研究中使用创造性PPI方法的优势和局限性。
方法:电子搜索于2023年4月14日在五个数据库上进行(WebofScience,PubMed,ASSIA,CINAHL,科克伦图书馆)。涉及传统的研究,非创造性PPI方法被排除.创造性的PPI方法被用来与作为研究顾问的人互动,而不是研究参与者。仅接受2009年以来以英语发布的主要数据。Title,在使用归纳主题分析生成主题之前,由两名独立的审稿人进行摘要和全文筛选。
结果:12篇论文符合纳入标准。使用的创作方法包括歌曲,诗,图纸,照片启发,戏剧表演,可视化,社交媒体,摄影,原型开发,文化动画,卡片分类和角色开发。分析确定了创造性方法的四个局限性和五个优势。限制包括创造性PPI的时间和资源密集型性质,缺乏对更广泛人群和道德问题的概括。外部因素,例如缺乏支持创造性PPI的基础设施,也影响了其实施。优势包括破坏权力层次结构,并为人们提供一个安全的空间来表达平凡或“禁忌”主题。创造性的方法也很吸引人,包容那些努力参与传统PPI的人,也可以节约成本和时间。
结论:“CreativePPI”是一个总称,包含许多不同的参与方法,每种方法都有优势和局限性。选择哪一个应该由研究的目的和要求决定,以及PPI组的特点和实际局限性。创造性的PPI可以比更传统的方法更有利,然而,可以考虑采用混合方法来获得两者的好处。创造性的PPI方法没有被广泛使用;然而,随着PPI更多地嵌入到研究中,这种情况可能会随着时间的推移而改变。
重要的是,从最初的头脑风暴开始,就将患者和公众纳入研究过程。从设计到交付。这被称为公共和患者参与(PPI)。他们的投入意味着研究与他们的需求和需求密切相关。传统上为了获得这种输入,进行访谈和小组讨论,但这可以排除那些认为这些活动不参与或无法访问的人,例如那些有语言挑战的人,学习障碍或记忆问题。PPI的创造性方法可以克服这一点。这是一个宽泛的术语,描述了让患者和公众参与研究的不同(非传统)方式,例如通过使用或艺术,动画或表演。这篇评论调查了在健康和社会护理研究中,PPI的创造性方法可能很困难(局限性)或有帮助(优势)的原因。在搜索了5个在线数据库后,该综述包括12项研究。PPI组包括成年人,儿童和有语言和记忆障碍的人。创作方法包括歌曲,诗,图纸,使用照片和戏剧,可视化,Facebook,创建原型,人物角色和卡片分类。限制包括时间,与创造性方法相关的成本和努力,缺乏对其他人群的应用,伦理问题和更广泛的研究界的买入。优势包括学者和公众之间的平等感,为人们创造一个表达自己的安全空间,包容性,创造性的PPI可以节约成本和时间。总的来说,这篇综述表明,创造性的PPI是值得的,然而,每种方法都有其自身的优势和局限性,其选择将取决于研究项目,PPI组特点和其他实际局限性,例如时间和资金限制。
BACKGROUND: There is increasing interest in using patient and public involvement (PPI) in research to improve the quality of healthcare. Ordinarily, traditional methods have been used such as interviews or focus groups. However, these methods tend to engage a similar demographic of people. Thus, creative methods are being developed to involve patients for whom traditional methods are inaccessible or non-engaging.
OBJECTIVE: To determine the strengths and limitations to using creative PPI methods in health and social care research.
METHODS: Electronic searches were conducted over five databases on 14th April 2023 (Web of Science, PubMed, ASSIA, CINAHL, Cochrane Library). Studies that involved traditional, non-creative PPI methods were excluded. Creative PPI methods were used to engage with people as research advisors, rather than study participants. Only primary data published in English from 2009 were accepted. Title, abstract and full text screening was undertaken by two independent reviewers before inductive thematic analysis was used to generate themes.
RESULTS: Twelve papers met the inclusion criteria. The creative methods used included songs, poems, drawings, photograph elicitation, drama performance, visualisations, social media, photography, prototype development, cultural animation, card sorting and persona development. Analysis identified four limitations and five strengths to the creative approaches. Limitations included the time and resource intensive nature of creative PPI, the lack of generalisation to wider populations and ethical issues. External factors, such as the lack of infrastructure to support creative PPI, also affected their implementation. Strengths included the disruption of power hierarchies and the creation of a safe space for people to express mundane or \"taboo\" topics. Creative methods are also engaging, inclusive of people who struggle to participate in traditional PPI and can also be cost and time efficient.
CONCLUSIONS: \'Creative PPI\' is an umbrella term encapsulating many different methods of engagement and there are strengths and limitations to each. The choice of which should be determined by the aims and requirements of the research, as well as the characteristics of the PPI group and practical limitations. Creative PPI can be advantageous over more traditional methods, however a hybrid approach could be considered to reap the benefits of both. Creative PPI methods are not widely used; however, this could change over time as PPI becomes embedded even more into research.
It is important that patients and public are included in the research process from initial brainstorming, through design to delivery. This is known as public and patient involvement (PPI). Their input means that research closely aligns with their wants and needs. Traditionally to get this input, interviews and group discussions are held, but this can exclude people who find these activities non-engaging or inaccessible, for example those with language challenges, learning disabilities or memory issues. Creative methods of PPI can overcome this. This is a broad term describing different (non-traditional) ways of engaging patients and public in research, such as through the use or art, animation or performance. This review investigated the reasons why creative approaches to PPI could be difficult (limitations) or helpful (strengths) in health and social care research. After searching 5 online databases, 12 studies were included in the review. PPI groups included adults, children and people with language and memory impairments. Creative methods included songs, poems, drawings, the use of photos and drama, visualisations, Facebook, creating prototypes, personas and card sorting. Limitations included the time, cost and effort associated with creative methods, the lack of application to other populations, ethical issues and buy-in from the wider research community. Strengths included the feeling of equality between academics and the public, creation of a safe space for people to express themselves, inclusivity, and that creative PPI can be cost and time efficient. Overall, this review suggests that creative PPI is worthwhile, however each method has its own strengths and limitations and the choice of which will depend on the research project, PPI group characteristics and other practical limitations, such as time and financial constraints.