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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Association française contre les myopathies – French association against myopathies.
An incision of the perineum and the posterior vaginal wall during labour.
Cayton, H. ‘Executive Director’s Message’, ADS newsletter, August 1996, p. 2.
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/).
Allsop, J., Jones, K. and Baggott, R. (2004) Health consumer groups in the UK: A new social movement? Sociology of Health and Illness 26 (6): 737–756.
Arksey, H. (1994) Expert and lay participation in the construction of medical knowledge. Sociology of Health & Illness 16 (4): 448–468.
Baggott, R., Allsop, J. and Jones, K. (2004) Speaking for Patients and Carers: Health Consumer Groups and the Policy Process. Basingstoke, UK: Palgrave Macmillan.
Barbot, J. (2002) Les malades en mouvements: la médecine et la science a l’épreuve du sida. Paris: Balland.
Barbot, J. (2006) How to build and ‘active’ patient? The work of AIDS associations in France. Social Science & Medicine 62 (3): 538–551.
Barker, K.K. (2005) The Fibromyalgia Story: Medical Authority and Women’s Worlds of Pain. Philadelphia, PA: Temple University Press.
Barker, K.K. (2011) Listening to lyrica: Contested illnesses and pharmaceutical determinism. Social Science & Medicine 73 (6): 833–842.
Berg, M. and Mol, A. (eds.) (1998) Differences in Medicine. Unravelling Practices, Techniques and Bodies. Durham, NC: Duke University Press.
Blume, S. (2009) The Artificial Ear: Cochlear Implants and the Culture of Deafness. New Brunswick, NJ: Rutgers University Press.
Borkman, T. (1976) Experiential knowledge: A new concept for the analysis of self-help groups. The Social Service Review 50 (3): 445–456.
Brown, P. and Zavestoski, S. (2004) Social movements in health: An introduction. Sociology of Health & Illness 26 (6): 679–694.
Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R. and Altman, R.G. (2004) Embodied health movements: New approaches to social movements in health. Sociology of Health & Illness 26 (1): 50–80.
Callon, M. (1986) Some elements of a sociology of translation: Domestication of the scallops and the fishermen of st Brieuc Bay. In: J. Law (ed.) Power, Action and Belief: A New Sociology of Knowledge. London: Routledge & Kegan Paul, pp. 196–223.
Callon, M., Lascoumes, P. and Barthe, Y. (2009) Acting in an Uncertain World. An Essay on Technical Democracy. Cambridge, Massachusetts: MIT Press.
Cambrosio, A., Keating, P., Schlich, T. and Weisz, G. (2006) Regulatory objectivity and the generation and management of evidence in medicine. Social Science & Medicine 63 (1): 189–199.
Clarke, A., Mamo, L., Fosket, J.R., Fishman, J.R. and Shim, J.K. (eds.) (2009) Biomedicalization: Technoscience, Health, and Illness in the US. Durham, NC: Duke University Press.
Conrad, P. (1992) Medicalization and social control. Annual Review of Sociology 18: 209–232.
Conrad, P. (2007) The Medicalization of Society: on the Transformation of Human Conditions into Treatable Disorders. Baltimore, MD: John Hopkins University Press.
Corbin, J. and Strauss, A. (1988) Unending Work and Care: Managing Chronic Illness at Home. San Francisco, CA: Jossey-Bass.
Dodier, N. (2003) Leçons politiques de l’épidémie de sida. Paris: Editions de l’EHESS.
Dodier, N. and Barbot, J. (2002) Multiplicity in scientific medicine: The experience of hiv-positive patients. Science, Technology & Human Value 27 (3): 404–440.
Epstein, S. (1995) The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology, and Human Values 20 (4): 408–437.
Epstein, S. (1996) Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley, CA: University of California Press.
Epstein, S. (2007) Inclusion. The Politics of Difference in Medical Research. Chicago, IL: The University of Chicago Press.
Epstein, S. (2008) Patient groups and health movements. In: E.J. Hackett, O. Amsterdamska, M. Lynch and J. Wajcman (eds.) The Handbook of Science and Technology Studies, 3rd edn. Massachusetts: MIT Press, pp. 499–538.
Epstein, S. (2011) Measuring success: Scientific, institutional, and cultural effects of patient advocacy. In: B. Hoffman, N. Tomes, R. Grob and M. Schlesinger (eds.) Patients as Policy Actors. London: Rutgers University Press, pp. 257–277.
Dumit, J. (2006) Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine 62 (3): 577–590.
Frickel, S., Gibbon, S., Howard, J., Kempner, J., Ottinger, G. and Hess, D.J. (2010) Undone science: Charting social movement and civil society challenges to research agenda setting. Science, Technology and Human Values 35 (4): 444–473.
Haas, P.M. (1992) Introduction: Epistemic communities and international policy coordination. International Organization 46 (1): 1–35.
Hess, D.J. (2009) The potentials and limitations of civil society research: Getting undone science done. Sociological Inquiry 79 (3): 306–327.
Hoffman, B., Tomes, N., Grob, R. and Schlesinger, M. (eds.) (2011) Patients as Policy Actors. London: Rutgers University Press.
Keating, P. and Cambrosio, A. (2003) Biomedical Platforms. Realigning the Normal and the Pathological in Late-Twentieth-Century Medicine. Cambridge, MA: MIT Press.
Landzelius, K. (2006) Introduction: Patient organization movements and new metamorphoses in patienthood. Social Science & Medicine 62 (3): 529–537.
Laurent, B. (2011) Technologies of democracy: Experiments and demonstrations. Science and Engineering Ethics 17 (4): 649–666.
Light, D.W. (1991) Professionalism as a countervailing power. Journal of Health Politics, Policy and Law 16 (3): 499–506.
Löfgren, H., de Leeuw, E. and Leahy, M. (eds.) (2011) Democratizing Health: Consumer Groups in the Policy Process. Cheltenham, UK: Edward Elgar.
Mol, A. and Law, J. (1994) Regions, networks and fluids: Anaemia and social topology. Social Studies of Science 24: 641–671.
Moreira, T. (2010) When trials are not enough: Clinical effectiveness versus cost-effectiveness in the dementia drugs controversy (2005–08). In: C. Will and T. Moreira (eds.) Medical Proofs, Social Experiments: Clinical Trials in Shifting Contexts. Farnam, UK: Ashgate, pp. 85–102.
Moreira, T. (2012) Health care standards and the politics of singularities: Shifting in and out of context. Science, Technology & Human Values 37 (4): 307–331.
Novas, C. (2006) The political economy of hope: Disease advocacy organisations, science and biovalue. BioSocieties 1 (3): 289–305.
O’Donovan, O., Moreira, T. and Howlett, E. (2013) Tracking transformations in health movement organizations: Alzheimer’s disease organizations and their changing cause regimes. Social Movement Studies 13 (2): 316–334.
Panofsky, A. (2011) Generating sociability to drive science: Patient advocacy organizations and genetics research. Social Studies of Science 41 (1): 31–57.
Pierret, J. (2003) The illness experience. State of knowledge and perspectives for research. Sociology of Health & Illness 25 (3): 4–22.
Rabeharisoa, V. and Callon, M. (1999) Le Pouvoir des malades. L’Association Française contre les Myopathies & la recherche. Paris: Les Presses de l’Ecole des mines de Paris.
Rabeharisoa, V. and Callon, M. (2004) Patients and scientists in French muscular dystrophy research. In: S. Jasanoff (ed.) States of Knowledge. The Co-Production of Science and Social Order. London: Routledge, pp. 142–160.
Rabeharisoa, V. (2006) From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France. Social Science & Medicine 62 (3): 564–576.
Rabinow, P. (1999) Artificiality and enlightenment: From sociobiology to biosociality. In: M. Biagioli (ed.) The Science Studies Reader. New York and London: Routledge, pp. 407–416.
Rapp, R., Heath, D. and Taussig, K.-S. (2001) Genealogical dis-ease: Where hereditary abnormality, biomedical explanation, and family responsibility meet. In: F. Franklin and S. McKinnon (eds.) Relative Values: Reconfiguring Kinship Studies. Durham, NC: Duke University Press, pp. 384–409.
Schicktanz, S. (2012) The troubles of representation: The legitimacy of PO as political actors. paper presented to the conference Patient Organizations, Health Movements and Medical Research: Varieties, Effects and Future of Civil Society Engagement in Science, Technology Development and Research Policies; 10–12 May, Augsburg.
Silverman, C. (2011) Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton, NJ: Princeton University Press.
Stengers, I. (2005) The cosmopolitical proposal. In: B. Latour and P. Weibel (eds.) Making Things Public: Atmospheres of Democracy. Cambridge, MA: MIT Press.
Stockdale, A. (1997) Conflicting Perspectives. Coping with Cystic Fibrosis in the Age of Molecular Medicine. Brandeis University.
Timmermans, S. and Berg, M. (2003) The Gold Standard: The Challenge of Evidence-Based Medicine and Standardization in Health Care. Philadelphia, PA: Temple University Press.
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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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
- evidence-based activism
- patients’ and health activists’ groups
- health-care policies
- collective inquiry
- technological democracies