Acting out disease

How patient organizations shaped modern medicine

De KU Leuven organiseert een serie (Engelstalige) lezingen online in een serie KU LEUVEN HEALTH HUMANITIES LECTURE SERIES. Deze serie behandelt dit jaar: PATIENT AGENCY

To be a patient, it seems, is to be passive – ‘to suffer the slings and arrows of outrageous fortune’, as Hamlet had it. But that is not the whole story. Patients cope with their conditions and contribute to their recovery process; they dispute and help change medical knowledge and therapies; they form patient organizations; and they make sense of their diagnosis through personal stories and narratives. In doing so, patients exercise their agency.

Op 21 april 2022 is de lezing speciaal interessant voor medisch historici. 

Contrary to previously established periodizations, patient organizations first emerged in the late nineteenth century. Throughout the twentieth century, they worked towards increased attention to particular illnesses, shared information on disease management, promoted treatments, and developed healthcare resources. In doing so, I propose that they significantly contributed to establishing certain disease concepts and associated practices – and that this deep involvement of patients in medicine in fact facilitated an extended reach of medical power which resonates in contemporary society. Studying patient organizations may help us understand how the idea of diseases as distinct entities was established, how this notion changed the medical landscape and the way we regard ourselves in relation to health and illness. This sheds new light on the role of patients in twentieth-century medicine, and gives crucial insights into whether patient involvement has lived up to the hopes of being a democratizing force in medicine.

Ylva Söderfeldt is senior lecturer in history of science and ideas at Uppsala University, where she is director of the Centre for Medical Humanities. Her research concerns encounters between experts and the people they are experts on – such as Deaf people and teachers of the deaf, or physicians and patients. Interesting things often happen when they meet: sometimes, conflicts arise when the experts are challenged by their human ”study objects”. On other occasions, they form alliances and pursue common goals. In every instance, however, there is some sort of negotiation between them about knowledge and power. Who knows best about a disease – the person experiencing it, or the doctor? What counts as relevant knowledge, and who gets to participate in discussing it? 

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