학술논문
Incorporation of patient and public involvement in statistical methodology research: a survey assessing current practices and attitudes of researchers
Document Type
Academic Journal
Author
Source
Research Involvement and Engagement. October 27, 2023, Vol. 9 Issue 1
Subject
Language
English
ISSN
2056-7529
Abstract
Author(s): Lucy Abell[sup.1], Francesca Maher[sup.1], Samina Begum[sup.2], Sarah Booth[sup.1], Jonathan Broomfield[sup.1], Sangyu Lee[sup.1], Ellesha Smith[sup.1], Rachael Stannard[sup.1], Lucy Teece[sup.1], Elpida Vounzoulaki[sup.3], Hannah Worboys[sup.1] and Laura J. Gray[sup.1] Background Patient and [...]
Background 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. Methods 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. Results 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. Conclusions 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. Keywords: Patient and public involvement (PPI), Methodology, Survey
Background 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. Methods 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. Results 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. Conclusions 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. Keywords: Patient and public involvement (PPI), Methodology, Survey