Paper short abstract:

This paper charts how patients have emerged as both expert and advocate in medicine. We trace both the kinds of "body knowledge" that can (and cannot) be understood as advice in medicine to how individual experience(s) of care failures are scaled up to broader critiques of care ecologies.

Paper long abstract:

Modern medicine confronts competing forms of knowledge and ways of knowing. The revolution in genomics to the continuing reworking of healthcare through the use of big data has remade the object that medicine manipulates. At the same time, the actual delivery of care is being reworked according to a logic, that is, of patient/person centred care (PCC), where the object of care is constituted as, in the first instance, an active subject and, increasingly, as a source of expertise in her own right. Thus, the patient as the silent bearer of inscrutable signs only decodable by a medical expert as excavated in Foucault's Birth of the Clinic, has given way to the receiver of care as an active participant in the clinical encounter and potentially an expert in shaping the strategic directions of care.

This paper charts how some patients have emerged as both a kind of expert and a new sort of advocate. Patient expertise has become ever more valued, and it is now a near-certainty that in the very near future even basic clinical sciences will have a statutory requirement of patients being at the decision-making table for the strategic directions as well as the scope of the ethics of basic research. We trace both the kinds of "body knowledge" that can (and cannot) be understood as advice in medicine to how individual experience(s) of care failures are scaled up to broader critiques of care ecologies, concluding with some informed speculation on what "co-design" might look like.