HPI: How do we achieve impactful patient and public involvement and engagement in statistical methodology research?

Context Statistical methods are fundamental to health research, they inform the way research studies are design and data are analysed. They help health professionals, like doctors and nurses, and policy makers to find new – and better – ways to prevent, diagnosis and treat health conditions. Research about statistical methods, or “statistical methodology research”, makes sure that we design research studies and analyse research data in the best way possible. This type of research is really important because it helps us to find new ways to improve patient outcomes, like showing that a new treatment works. It is crucial that health researchers, including people who do statistical methodology research, do patient and public involvement and engagement (PPIE) in their research. This is because members of the public provide unique insights, making the research better quality, clearer and more relevant. Challenge PPIE can be difficult in statistical methodology research because this type of research is very technical. It is often a step removed from direct patient benefit because it is not always looking at just one health condition or treatment – instead, it is looking to find better ways to design studies or analyse data which can be applied in many settings. This all means that it can be hard to talk about why PPIE is important and to get meaningful PPIE input. In a survey, we asked statisticians what they thought about PPIE in statistical methodology research; many did not feel confident and said that they needed guidance. Aims and objectives For this project, working closely with public contributors throughout, we aim to create guidance that will support both researchers and public contributors to do impactful PPIE in statistical methodology research. We will: Look at existing literature (research works and other guidance documents) to learn about how other people have approached PPIE. We will look at: what works and what doesn’t work; what impact the PPIE has had; and recommendations that have been made. Interview people who have done PPIE, observe PPIE meetings, and use study documents about PPIE to understand what works and what has the most impact. Create case studies – an in-depth look at PPIE in statistical methodology research – to show barriers and facilitators and to give examples of what impactful PPIE looks like. After we have done the above, we will co-develop the guidance using workshops for researchers and public contributors. To make sure that our guidance has impact and changes practice, we will make it freely available through the NIHR website. We will hold a virtual launch event and share it widely through social media and our own networks. We will present at conferences, create materials for use in teaching, and hold webinars. We will work with the NIHR Research Support Service to ensure the guidance is provided to statistical methodologists who are developing funding applications. In the future we want to develop training courses to support implementation. Potential applications and benefits The guidance that we create will improve the way PPIE is done in statistical methodology research. This will lead to better research that benefits fully from the lived experiences of people that we eventually want to impact. We anticipate that our guidance will also help researchers in other technical fields which need good PPIE, such as data science and health economics.