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Paper short abstract

In this presentation, we explore the limits of patients’ knowledge and expertise. We argue that structural barriers, such as financial cuts in healthcare, limit patients’ power and we propose that an STS analysis of the nature of knowledge is necessary for understanding the phenomenon.

Paper long abstract

Patients’ knowledge can be a powerful resource that they can produce, share, and use to promote change. However, the transformative power of this knowledge is shaped and even limited by structural factors. Patients’ expertise can be ignored, dismissed or deemed inaccurate. In this presentation, we explore patients’ knowledge as a double-edged sword. Our analysis derives from an ongoing UK-based project including over 60 interviews with patients with ME/CFS, Long Covid and fibromyalgia, medical professionals, and researchers. We discuss the complex and contradictory processes through which patients build, use, or even hide their expertise. We examine the precarious status of patients’ knowledge and how it can be shaped by the uncertainty that still surrounds these conditions. Both the patients and medical professionals we have encountered have struggled with the elusive nature of these conditions, often diagnosed by exclusion and characterised by a lack of resources and effective treatment options. However, for many, obtaining a diagnosis and having more accurate information about their health difficulties does not lead to any tangible improvement in their lives. In a context of economic retrenchment and reduced resources for healthcare services and patient support, knowing more might not be enough to navigate a complex present and a future made even more fragile by the shifting nature of these conditions. An STS-informed analysis of the social, political and economic dimensions of this knowledge, which is never neutral but partial and situated, can help make sense of the difficulties that patients encounter.