Engagement, Lived Experience and Qualitative Sociology in Health Research: Proximal, but Incongruent.

This paper critically examines the assumption of compatibility between the principles and tools of qualitative social research and the rationales for engaged health research, particularly in their shared valuation of lived experience and patient voice as credible knowledge sources. The assumption of, and the insistence on, alignment – sometimes strategically aimed at carving out a niche for qualitative social science within applied health research – fail to fully consider the consequences of taking experiential expertise as an explanation of the world rather than as a topic of enquiry. Drawing particularly on Niklas Luhmann, we problematise assumptions of alignment between theoretically-informed sociologies of lived experience and the epistemic justice claims for engaging with lived experience in health research. We locate their confusion in the struggle for recognition of lived experience in biomedicine, the anxiety of social scientists to appear unaligned with the normalising gaze of biomedicine, and the institutional legitimization of engagement in healthcare research. When drawing on patient experiences, qualitative social research does more than echo patient accounts—it critically examines them within broader broader transformations in health systems. While both engagement and qualitative sociology are vital, they are different, and this difference can be a source of generative unsettling.