Introduction: The paradox of representation in public involvement in research is well recognized, whereby public contributors are seen as either too naïve to meaningfully contribute or too knowledgeable to represent ‘the average patient’. Given the underlying assumption that expertise undermines contributions made, more expert contributors who have significant experience in research can be a primary target of criticism. We conducted a secondary analysis of a case of expert involvement and a case of lived experience, to examine how representation was discussed in each. Methods: We analysed a case of a Lived Experience Advisory Panel (LEAP) chosen for direct personal experience of a topic and a case of an expert Patient and Public Involvement (PPI) panel. Secondary analysis was of multiple qualitative data sources, including interviews with the LEAP contributors and researchers, Panel evaluation data and documentary analysis of researcher reports of Panel impacts. Analysis was undertaken collaboratively by the author team of contributors and researchers. Results: Data both from interviews with researchers and reported observations by the Panel indicated that representation was a concern for researchers in both cases. Consistent with previous research, this challenge was deployed in response to contributors requesting changes to researcher plans. However, we also observed that when contributor input could be used to support research activity, it was described unequivocally as representative of ‘the patient view’. We describe this as researchers holding a confirmation logic. By contrast, contributor accounts enacted a synthesis logic, which emphasized multiplicity of viewpoints and active dialogue. These logics are incompatible in practice, with the confirmation logic constraining the potential for the synthesis logic to be achieved. Conclusion: Researchers tend to enact a confirmation logic that seeks a monophonic patient voice to legitimize decisions. Contributors are therefore limited in their ability to realize a synthesis logic that would actively blend different types of knowledge. These different logics hold different implications regarding representation, with the synthesis logic emphasizing diversity and negotiation, as opposed to the current system in which ‘being representative' is a quality attributed to contributors by researchers. Patient or Public Contribution: Patient contributors are study coauthors, partners in analysis and reporting.
- collaborative research
- patient involvement