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患者和公众参与研究的互利之处:一项可行性研究(MoTaStim-Foot)的实例

The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot).

作者信息

Aries Alison M, Bailey Paul, Hunter Susan M

机构信息

School of Allied Health Professions, Faculty of Medicine and Health Sciences, Keele University, Staffordshire, ST5 5BG, UK.

出版信息

Res Involv Engagem. 2021 Dec 4;7(1):87. doi: 10.1186/s40900-021-00330-w.

Abstract

BACKGROUND

Patient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR). However, PPI in research occurs in many different capacities and numerous frameworks exist for reporting or appraising patient involvement activities. The aim of this article is to describe processes involving PPI contributions to an NIHR-funded mixed-methods feasibility study (MoTaStim-Foot). Details of PPI advisors' input, from initial identification and prioritisation of research ideas, to research delivery and dissemination, are discussed.

METHODS

Extensive PPI for MoTaStim-Foot is reported, with consideration of Research Design Service (RDS) advice for PPI for research, involving identifying and prioritising: design; grant proposal development; undertaking/managing research; analysing and interpreting; dissemination; implementation; monitoring and evaluation. Two PPI workshops were undertaken; success in meeting UK standards for public involvement was audited against specific success criteria by two researchers, with discussion and consideration regarding how well our PPI achieved inclusive opportunities, working together, support and learning, governance, communications and impact. How PPI can be improved for future trials was also considered. Although the advantages of PPI for researchers were considered, the benefits for PPI advisors were also analysed.

RESULTS

UK standards for public involvement were achieved, along with seven relevant research processes suggested by the RDS. PPI advisor contributions: informed study design; contributed to successful funding; enhanced trial delivery by informing participant information sheets and daily diaries; added value through undertaking note-taker roles in focus groups and helping to analyse focus group transcripts; and assisted in dissemination. However, benefits were mutual with PPI advisors reporting feeling valued and respected, a sense of pride with renewed confidence and purpose in life.

CONCLUSIONS

Importance and value of PPI, to researchers and patient advisors, have been highlighted, reinforcing the benefits of working in partnership with PPI advisors. Trial registration ISRCTN 13676183; Central Portfolio Management System ID 30449. Registered 02/01/2015, https://www.isrctn.com/ISRCTN13676183 .

摘要

背景

在过去二十年中,患者及公众参与(PPI)研究的情况稳步增加,现在包括英国国家卫生研究院(NIHR)在内的许多资助机构都期望并为其提供了适当的资源。然而,研究中的PPI以多种不同的身份出现,并且存在许多用于报告或评估患者参与活动的框架。本文旨在描述在一项由NIHR资助的混合方法可行性研究(MoTaStim-Foot)中涉及PPI贡献的过程。讨论了PPI顾问从最初确定研究想法并进行优先级排序到研究实施和传播等方面的投入细节。

方法

报告了针对MoTaStim-Foot的广泛PPI情况,并考虑了研究设计服务(RDS)关于研究中PPI的建议,包括确定并优先考虑:设计;资助申请的制定;开展/管理研究;分析与解释;传播;实施;监测与评估。举办了两次PPI研讨会;两名研究人员根据特定的成功标准审核了在实现英国公众参与标准方面的成效,并就我们的PPI在实现包容性机会、合作、支持与学习、治理、沟通及影响等方面的情况进行了讨论和考量。还考虑了如何在未来的试验中改进PPI。虽然考虑了PPI对研究人员的优势,但也分析了对PPI顾问的益处。

结果

达到了英国公众参与标准,以及RDS提出的七个相关研究过程。PPI顾问的贡献包括:为研究设计提供信息;促成了成功获得资助;通过为参与者信息表和日常日记提供信息来加强试验实施;通过在焦点小组中担任记录员并协助分析焦点小组记录稿增加价值;以及协助传播。然而,益处是相互的,PPI顾问报告称感到自己受到重视和尊重,有一种自豪感,对生活重新充满信心和目标。

结论

强调了PPI对研究人员和患者顾问的重要性和价值,强化了与PPI顾问合作的益处。试验注册号ISRCTN 13676183;中央项目管理系统编号30449。于2015年1月2日注册,https://www.isrctn.com/ISRCTN13676183

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4c0e/8645133/7783376ece44/40900_2021_330_Fig1_HTML.jpg

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