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Patients’ organisations are increasingly becoming spaces of innovation in the relation of citizens with science, industry and public services. The novelty of their approach lies in the use of their experiential and clinical knowledge to make themselves part of the networks of experts on their condition. These groups do not want to be relegated to the role of fund raisers and passive providers of data but are increasingly engaged in the process of producing and circulating knowledge that is critical to their condition.
Drawing on fieldwork in four condition areas (rare diseases, childbirth, Attention Deficit Hyperactivity Disorder, and Alzheimer’s disease) Madeleine Akrich and Vololona Rabeharisoa show that patients’ organizations’ engagement with knowledge, results in the production of new evidence for grounding research and health policies. The speakers propose the notion of 'evidence-‐based activism' to describe the active contribution of patients’ organizations in the shaping of expertise to assert their preoccupations and sustain their claims.
In contrast to health movements which contest health institutions from the outside, patients’ and activists’ groups which embrace ‘evidence-based activism’ work ‘from within’ to imagine new epistemic and political appraisal of their causes and conditions. For this reason they represent a new form of citizen participation in traditional institutions based on the collective production of knowledge.
Nick Sireau Chairman of the AKU Society a patient-led group for the debilitating genetic disease alkaptonuria (AKU) presented the process that led this patient group to drive research and promote a series of clinical trials to accelerate the search for a cure.