Abell Lucy, Maher Francesca, Begum Samina, Booth Sarah, Broomfield Jonathan, Lee Sangyu, Smith Ellesha, Stannard Rachael, Teece Lucy, Vounzoulaki Elpida, Worboys Hannah, Gray Laura J
Department of Population Health Sciences, University of Leicester, Leicester, UK.
Statistical Methodology PPI Group, University of Leicester, Leicester, UK.
Res Involv Engagem. 2023 Oct 27;9(1):100. doi: 10.1186/s40900-023-00507-5.
Patient and public involvement (PPI) ensures that research is designed and conducted in a manner that is most beneficial to the individuals whom it will impact. It has an undisputed place in applied research and is required by many funding bodies. However, PPI in statistical methodology research is more challenging and work is needed to identify where and how patients and the public can meaningfully input in this area.
A descriptive cross-sectional research study was conducted using an online questionnaire, which asked statistical methodologists about themselves and their experience conducting PPI, either to inform a grant application or during a funded statistical methodology project. The survey included both closed-text responses, which were reported using summary statistics, and open-ended questions for which common themes were identified.
119 complete responses were recorded. Individuals who completed the survey displayed an even range of ages, career lengths and positions, with the majority working in academia. 40.3% of participants reported undertaking PPI to inform a grant application and the majority reported that the inclusion of PPI was received positively by the funder. Only 21.0% of participants reported undertaking PPI during a methodological project. 31.0% of individuals thought that PPI was "very" or "extremely" relevant to statistical methodology research, with 45.5% responding "somewhat" and 24.4% answering "not at all" or "not very". Arguments for including PPI were that it can provide the motivation for research and shape the research question. Negative opinions included that it is too technical for the public to understand, so they cannot have a meaningful impact.
This survey found that the views of statistical methodologists on the inclusion of PPI in their research are varied, with some individuals having particularly strong opinions, both positive and negative. Whilst this is clearly a divisive topic, one commonly identified theme was that many researchers are willing to try and incorporate meaningful PPI into their research but would feel more confident if they had access to resources such as specialised training, guidelines, and case studies.
患者及公众参与（PPI）可确保研究的设计和开展方式对其将影响的个体最为有益。它在应用研究中具有无可争议的地位，并且是许多资助机构所要求的。然而，统计方法学研究中的PPI更具挑战性，需要开展工作以确定患者和公众能够在该领域有意义地提供意见的地点和方式。
采用在线问卷进行了一项描述性横断面研究，该问卷询问了统计方法学家自身情况以及他们开展PPI的经验，这些经验或是用于资助申请，或是在一个获得资助的统计方法学项目期间。调查既包括使用汇总统计数据报告的封闭式文本回答，也包括确定了共同主题的开放式问题。
记录了119份完整回复。完成调查的个体年龄、职业生涯时长和职位分布均匀，大多数人在学术界工作。40.3%的参与者报告开展PPI是为了给资助申请提供信息，且大多数人报告资助者对纳入PPI持积极态度。只有21.0%的参与者报告在方法学项目期间开展PPI。31.0%的个体认为PPI与统计方法学研究“非常”或“极其”相关，45.5%的人回答“有些”相关，24.4%的人回答“完全不”或“不太”相关。支持纳入PPI的理由是它可为研究提供动力并塑造研究问题。负面观点包括公众难以理解其专业性，因此他们无法产生有意义的影响。
本次调查发现，统计方法学家对于在其研究中纳入PPI的看法各不相同，一些人有特别强烈的观点，既有积极的也有消极的。虽然这显然是一个有分歧的话题，但一个普遍确定的主题是，许多研究人员愿意尝试并将有意义的PPI纳入他们的研究，但如果能够获得诸如专业培训、指南和案例研究等资源，他们会更有信心。
