Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society

Abstract

This is a post-peer-review pre-copyedit version of an article published in BioSocieties. The denitive publisher-authenticated version Rabeharisoa, V., Moreira, T. and Akrich, M. (2014) 'Evidence-based activism : patients' organisations, users' and activist's groups in knowledge.', BioSocieties., 9 (2). pp. 111-128 is available online at: http://dx.doi.org/10.1057/biosoc.2014.2Additional information: Use policyThe full-text may be used and/or reproduced, and given to third parties in any format or medium, without prior permission or charge, for personal research or study, educational, or not-for-prot purposes provided that:• a full bibliographic reference is made to the original source • a link is made to the metadata record in DRO • the full-text is not changed in any way The full-text must not be sold in any format or medium without the formal permission of the copyright holders.Please consult the full DRO policy for further details. supported by the European Commission FP7. We warmly thank all patients' organisations which participated to our surveys. We owe a lot to our partners in this project, who took an active part in providing empirical data and analysis.3 Evidence-based activism: Patients' organisations, users' and activist's groups in knowledge society AbstractThis article proposes the notion of 'evidence-based activism' to capture patients' and health activists' groups' focus on knowledge production and knowledge mobilisation in the governance of health issues. It introduces empirical data and analysis on groups active in four countries (France, Ireland, Portugal, and the UK), and in four condition areas (rare diseases, Alzheimer's disease, ADHD -Attention Deficit Hyperactivity Disorder, and childbirth). It shows how these groups engage with, and articulate a variety of credentialed knowledge and 'experiential knowledge' with a view to explore concerned people's situations, to make themselves part and parcel of the networks of expertise on their conditions in their national contexts, and to elaborate evidence on the issues they deem important to address both at an individual and a collective level.This article argues that in contrast to health movements which contest 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. 'Evidence-based activism' entails a collective inquiry associating patients/activists and specialists/professionals in the conjoint fabrics of scientific statements and political claims.From a conceptual standpoint, 'evidence-based activism' sheds light on the on-going coproduction of matters of fact and matters of concern in contemporary technological democracies.

Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation

“…In this purview, it is compelling to prefigure issues of democracy and representation, for instance, against which much of the literature has contrasted similar organizations and initiatives (e.g. Epstein 2008;Rabeharisoa et al 2013). However, it became clear to us that none of the central issues with which we were concerned could be satisfactorily pursued in the field without first accounting for the premises of systematic patient involvement in medical knowledge creation, and the role technology plays in this process, both as a platform of sociality and as a computational force supporting data collection and, critically, data aggregation and analysis.…”

Participatory Spaces of Mental Health Service User Organizations in the Post-deinstitutional Era: Mapping Roles and Challenges

“…The included texts reflect this increased integration of service user perspectives where, for instance, empowerment and recovery scales are frequently applied to measure the outcomes of services provided by MHSUOs (Brown et al 2008a;Corrigan 2006;Kaplan et al 2012;Rogers et al 2007). Rabeharisoa et al (2014) discuss how service user groups can achieve change through constructing new political and scientific understandings of their experience. Knowledge production has enabled the service user movement to claim discursive space and thereby contribute to renegotiation of the hegemonic discourse.…”

Experience as knowledge: Disability, distillation and (reprogenetic) decision-making

“…The decline of paternalistic models of medicine, the paralleled increase in, and emphasis on, personalised medicine and patient organisations together with the gains made by both the feminist and disability rights movement since the 1970s have all contributed to the expanding value placed on the realm of the experiential as a resource with which to supplement, supplant or challenge medical knowledge (Abel and Browner, 1998;Frank, 1995;D'Agincourt-Canning, 2005;Williams and Popay, 1994;Bulme, 2016;Baillergeau and Duyvendak, 2016;Rabeharisoa et al, 2014;Britten and Maguire, 2016;Boardman, 2014).…”