There is a paradox of representation in public involvement in research; public contributors are seen as either too naïve to meaningfully contribute or too knowledgeable to represent ‘the average patient’. More expert contributors who have experience in research can therefore be a target for criticism.
This study in the journal Health Expectations aimed to examine how representation was discussed in two different scenarios—expert involvement and lived experience. The authors analysed the case of a Lived Experience Advisory Panel (LEAP) chosen for direct personal experience of a topic and the case of an expert Patient and Public Involvement (PPI) panel.
They concluded that researchers tend to enact a confirmation logic that seeks a simple, unified patient voice to legitimise decisions. Contributors are therefore limited in their ability to realise a synthesis logic that would actively blend different types of knowledge.