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

Abstract

This 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 United Kingdom), 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 at 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 ongoing co-production of matters of fact and matters of concern in contemporary technological democracies.

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Notes

  1. 1.

    Association française contre les myopathies – French association against myopathies.

  2. 2.

    An incision of the perineum and the posterior vaginal wall during labour.

  3. 3.

    Cayton, H. ‘Executive Director’s Message’, ADS newsletter, August 1996, p. 2.

  4. 4.

    This project benefited from a three-year financial support (2009–2012) from the Science in Society initiative of the European Commission FP7 (http://www.csi.ensmp.fr/WebCSI/EPOKSWebSite/).

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Acknowledgements

This article is based on a European research project called EPOKS (European Patients’ Organizations in Knowledge Society; see http://www.csi.ensmp.fr/WebCSI/EPOKSWebSite/) 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.

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Correspondence to Vololona Rabeharisoa.

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Rabeharisoa, V., Moreira, T. & Akrich, M. Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society. BioSocieties 9, 111–128 (2014). https://doi.org/10.1057/biosoc.2014.2

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Keywords

  • evidence-based activism
  • patients’ and health activists’ groups
  • expertise
  • health-care policies
  • collective inquiry
  • technological democracies