13 January 2023
Whole team event
The whole team, including the lay researchers, met again to discuss a preliminary Directed Acyclic Graph (DAG). This is a diagram that describes how different variables are thought to be causally related to each. It was co-produced by the researchers and experts by experience. The DAG was intended to capture important variables that had been raised previously by the lay researchers and a young people’s advisory group.
The meeting was very useful. In addition to discussing the DAG, the data scientist on the project ran through some preliminary results of the machine learning analysis to see if the findings resonated with the experts by experience. This led to some debate and the PPI lead is going to follow up with the lay researchers individually following the meeting.
Finally, I delivered some training on the concept of machine learning in order to de-mystify this approach.
All team members contributed during the meeting and it was great to hear a variety of alternative perspectives on the topic. The involvement of lay researchers, whom bring a range of lived experience to the project, is actively informing our analyses and helping us make sense of any findings.
Until recently public and patient involvement was rarely substantially sought, or meaningfully implemented in data science research. Researchers perhaps often (wrongly) perceived that the subject would be "too technical" for lay people, or that any input would not be meaningful. However, our experience on RAPPORT overturns such views. Indeed a recent paper in the International Journal of Epidemiology, of which one of our team, Noemi, was a co-author described how "non technical" can be engaged in drawing up DAGs to enhance such causal research. See this recent paper here.
Co-producing reporting guidelines for targeted learning studies
24th February 2023 There has been well publicised problems with reproducible and transparent reporting from observational data based research studies. This is a particular issue once machine learning gets involved, come due to the complexity. Many of the studies that are published would be difficult to reproduce, even by the research team themselves. Therefore today we had a workshop with two lived experience expert researchers, an additional lived experience expert and myself. Together we went through the draft reporting guidance we have been creating for targeted learning studies. This was a very useful exercise and helped harness lay researcher and lived experience into the guidance. This was important not just for making plans of analysis and protocols available publicly before analysis starts. It was also important in thinking about how results are reported and disseminated and the role of lived experience experts in this process. These guidelines were intended to build on s
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