Summary
The paradox of representation in public involvement in research is well recognised, 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. Knowles SE et al. conducted a secondary analysis of a case of expert involvement and a case of lived experience, to examine how representation was discussed in each.
Content
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 emphasised 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.
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