, Volume 9, Issue 2, pp 111–128 | Cite as

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

  • Vololona Rabeharisoa
  • Tiago Moreira
  • Madeleine Akrich


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.


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



This article is based on a European research project called EPOKS (European Patients’ Organizations in Knowledge Society; see 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.


  1. 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.CrossRefGoogle Scholar
  2. Arksey, H. (1994) Expert and lay participation in the construction of medical knowledge. Sociology of Health & Illness 16 (4): 448–468.CrossRefGoogle Scholar
  3. Baggott, R., Allsop, J. and Jones, K. (2004) Speaking for Patients and Carers: Health Consumer Groups and the Policy Process. Basingstoke, UK: Palgrave Macmillan.Google Scholar
  4. Barbot, J. (2002) Les malades en mouvements: la médecine et la science a l’épreuve du sida. Paris: Balland.Google Scholar
  5. Barbot, J. (2006) How to build and ‘active’ patient? The work of AIDS associations in France. Social Science & Medicine 62 (3): 538–551.CrossRefGoogle Scholar
  6. Barker, K.K. (2005) The Fibromyalgia Story: Medical Authority and Women’s Worlds of Pain. Philadelphia, PA: Temple University Press.Google Scholar
  7. Barker, K.K. (2011) Listening to lyrica: Contested illnesses and pharmaceutical determinism. Social Science & Medicine 73 (6): 833–842.CrossRefGoogle Scholar
  8. Berg, M. and Mol, A. (eds.) (1998) Differences in Medicine. Unravelling Practices, Techniques and Bodies. Durham, NC: Duke University Press.Google Scholar
  9. Blume, S. (2009) The Artificial Ear: Cochlear Implants and the Culture of Deafness. New Brunswick, NJ: Rutgers University Press.Google Scholar
  10. Borkman, T. (1976) Experiential knowledge: A new concept for the analysis of self-help groups. The Social Service Review 50 (3): 445–456.CrossRefGoogle Scholar
  11. Brown, P. and Zavestoski, S. (2004) Social movements in health: An introduction. Sociology of Health & Illness 26 (6): 679–694.CrossRefGoogle Scholar
  12. 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.CrossRefGoogle Scholar
  13. 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.Google Scholar
  14. Callon, M., Lascoumes, P. and Barthe, Y. (2009) Acting in an Uncertain World. An Essay on Technical Democracy. Cambridge, Massachusetts: MIT Press.Google Scholar
  15. 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.CrossRefGoogle Scholar
  16. 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.CrossRefGoogle Scholar
  17. Conrad, P. (1992) Medicalization and social control. Annual Review of Sociology 18: 209–232.CrossRefGoogle Scholar
  18. Conrad, P. (2007) The Medicalization of Society: on the Transformation of Human Conditions into Treatable Disorders. Baltimore, MD: John Hopkins University Press.Google Scholar
  19. Corbin, J. and Strauss, A. (1988) Unending Work and Care: Managing Chronic Illness at Home. San Francisco, CA: Jossey-Bass.Google Scholar
  20. Dodier, N. (2003) Leçons politiques de l’épidémie de sida. Paris: Editions de l’EHESS.Google Scholar
  21. Dodier, N. and Barbot, J. (2002) Multiplicity in scientific medicine: The experience of hiv-positive patients. Science, Technology & Human Value 27 (3): 404–440.CrossRefGoogle Scholar
  22. 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.CrossRefGoogle Scholar
  23. Epstein, S. (1996) Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley, CA: University of California Press.Google Scholar
  24. Epstein, S. (2007) Inclusion. The Politics of Difference in Medical Research. Chicago, IL: The University of Chicago Press.CrossRefGoogle Scholar
  25. 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.Google Scholar
  26. 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.Google Scholar
  27. Dumit, J. (2006) Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine 62 (3): 577–590.CrossRefGoogle Scholar
  28. 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.CrossRefGoogle Scholar
  29. Haas, P.M. (1992) Introduction: Epistemic communities and international policy coordination. International Organization 46 (1): 1–35.CrossRefGoogle Scholar
  30. Hess, D.J. (2009) The potentials and limitations of civil society research: Getting undone science done. Sociological Inquiry 79 (3): 306–327.CrossRefGoogle Scholar
  31. Hoffman, B., Tomes, N., Grob, R. and Schlesinger, M. (eds.) (2011) Patients as Policy Actors. London: Rutgers University Press.Google Scholar
  32. Keating, P. and Cambrosio, A. (2003) Biomedical Platforms. Realigning the Normal and the Pathological in Late-Twentieth-Century Medicine. Cambridge, MA: MIT Press.Google Scholar
  33. Landzelius, K. (2006) Introduction: Patient organization movements and new metamorphoses in patienthood. Social Science & Medicine 62 (3): 529–537.CrossRefGoogle Scholar
  34. Laurent, B. (2011) Technologies of democracy: Experiments and demonstrations. Science and Engineering Ethics 17 (4): 649–666.CrossRefGoogle Scholar
  35. Light, D.W. (1991) Professionalism as a countervailing power. Journal of Health Politics, Policy and Law 16 (3): 499–506.CrossRefGoogle Scholar
  36. Löfgren, H., de Leeuw, E. and Leahy, M. (eds.) (2011) Democratizing Health: Consumer Groups in the Policy Process. Cheltenham, UK: Edward Elgar.CrossRefGoogle Scholar
  37. Mol, A. and Law, J. (1994) Regions, networks and fluids: Anaemia and social topology. Social Studies of Science 24: 641–671.CrossRefGoogle Scholar
  38. 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.Google Scholar
  39. 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.CrossRefGoogle Scholar
  40. Novas, C. (2006) The political economy of hope: Disease advocacy organisations, science and biovalue. BioSocieties 1 (3): 289–305.CrossRefGoogle Scholar
  41. 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.CrossRefGoogle Scholar
  42. Panofsky, A. (2011) Generating sociability to drive science: Patient advocacy organizations and genetics research. Social Studies of Science 41 (1): 31–57.CrossRefGoogle Scholar
  43. Pierret, J. (2003) The illness experience. State of knowledge and perspectives for research. Sociology of Health & Illness 25 (3): 4–22.CrossRefGoogle Scholar
  44. 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.Google Scholar
  45. 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.Google Scholar
  46. Rabeharisoa, V. (2006) From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France. Social Science & Medicine 62 (3): 564–576.CrossRefGoogle Scholar
  47. 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.Google Scholar
  48. 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.Google Scholar
  49. 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.Google Scholar
  50. Silverman, C. (2011) Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton, NJ: Princeton University Press.CrossRefGoogle Scholar
  51. Stengers, I. (2005) The cosmopolitical proposal. In: B. Latour and P. Weibel (eds.) Making Things Public: Atmospheres of Democracy. Cambridge, MA: MIT Press.Google Scholar
  52. Stockdale, A. (1997) Conflicting Perspectives. Coping with Cystic Fibrosis in the Age of Molecular Medicine. Brandeis University.Google Scholar
  53. 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.Google Scholar

Copyright information

© The London School of Economics and Political Science 2014

Authors and Affiliations

  • Vololona Rabeharisoa
    • 1
  • Tiago Moreira
    • 2
  • Madeleine Akrich
    • 1
  1. 1.Centre de sociologie de l’innovation, Mines-ParisTechParisFrance
  2. 2.School of Applied Social Sciences, Durham UniversityDurhamUK

Personalised recommendations