Smith Aiden, Worboys Hannah, Begum Samina, Bennett Derrick, Broomfield Jonathan, Cro Suzie, Evans-Hill Laura, Greenwood Justin, Henley Ania, Mancini Mary, Royle Kara-Louise, Saul Helen, Sergeant Jamie, Stewart Derek, Tyrer Freya, Wason James, Yau Christopher, Gray Laura J
Department of Population Health Sciences, University of Leicester, Leicester, UK.
Public Contributor.
Stat Med. 2025 Jul;44(15-17):e70159. doi: 10.1002/sim.70159.
Patient and Public Involvement (PPI) is well-established in applied health research but remains under utilised in statistical methodology research due to perceived irrelevance and communication challenges. This paper summarises a one-day workshop held in February 2024 in Leicester, organised by the University of Leicester and the NIHR Statistics Group, aimed at addressing barriers to meaningful PPI in statistical methodology. The workshop brought together statisticians and experienced public contributors to discuss strategies, share case studies, and offer practical guidance on conducting effective PPI. Key barriers identified included: (1) uncertainty about the relevance of PPI in methodology-focused research; (2) public contributors' anxiety over mathematical complexity; and (3) mismatched expectations due to different backgrounds in applied versus methodological research. Case studies showcased how PPI led to improved model structures, identification of data issues, and enhanced study materials. The importance of communication was a recurrent theme, with recommendations including use of plain English, regular updates, and visual storytelling tools. Feedback from attendees indicated increased confidence and motivation to engage in PPI. Public contributors emphasised the need for respectful, non-patronising interactions and flexible roles within projects. Recommendations include managing expectations, enhancing accessibility, co-developing materials, and fostering diversity among contributors. This paper highlights the need for tailored strategies to integrate PPI into statistical methodology, including the development of resources (e.g., glossaries, animations) and further case study collection. Future work will focus on expanding these resources, addressing challenges of equity and inclusion, and supporting PPI in complex methodological areas like simulation and model development.
患者及公众参与(PPI)在应用健康研究中已得到充分确立,但由于被认为不相关以及沟通挑战,在统计方法研究中仍未得到充分利用。本文总结了2024年2月在莱斯特由莱斯特大学和国家卫生研究院统计小组组织举办的为期一天的研讨会,旨在解决统计方法中有意义的PPI的障碍。该研讨会汇聚了统计学家和经验丰富的公众参与者,以讨论策略、分享案例研究,并就开展有效的PPI提供实用指导。确定的主要障碍包括:(1)PPI在以方法为重点的研究中的相关性存在不确定性;(2)公众参与者对数学复杂性感到焦虑;(3)由于应用研究与方法研究背景不同而导致的期望不匹配。案例研究展示了PPI如何带来改进的模型结构、数据问题的识别以及更好的研究材料。沟通的重要性是一个反复出现的主题,建议包括使用简单易懂的英语、定期更新以及视觉叙事工具。与会者的反馈表明参与PPI的信心和动力有所增强。公众参与者强调在项目中需要尊重、不摆架子的互动以及灵活的角色。建议包括管理期望、提高可及性、共同开发材料以及促进参与者的多样性。本文强调需要制定量身定制的策略,将PPI纳入统计方法,包括开发资源(如术语表、动画)以及进一步收集案例研究。未来的工作将专注于扩展这些资源、应对公平和包容方面的挑战,以及在模拟和模型开发等复杂方法领域支持PPI。