Journal of Bioethical Inquiry

, Volume 15, Issue 3, pp 341–349 | Cite as

Representing Whom? U.K. Health Consumer and Patients’ Organizations in the Policy Process

  • Rob BaggottEmail author
  • Kathryn L. Jones
Symposium: Collective Representation in Healthcare Policy


This paper draws on nearly two decades of research on health consumer and patients’ organizations (HCPOs) in the United Kingdom. In particular, it addresses questions of representation and legitimacy in the health policy process. HCPOs claim to represent the collective interests of patients and others such as relatives and carers. At times they also make claims to represent the wider public interest. Employing Pitkin’s classic typology of formalistic, descriptive, symbolic, and substantive representation, the paper explores how and in what sense HCPOs represent their constituencies. We found that policymakers themselves are less concerned with formal mechanisms adopted by groups and are more concerned with credibility, in particular whether HCPOs carry the confidence of their constituents. While some concerns about legitimacy remain, particularly in relation to funding from commercial interests, we argue that HCPOs bring a unique perspective to the policy process and to focus purely on formalistic representation provides only a partial understanding of their representative role and a constrained view of their collective moral claims.


Representation Health consumer and patients’ organizations Health policymaking 


  1. Allsop, J., K. Jones, and R. Baggott. 2004. Health consumer groups in the UK: A new social movement? Sociology of Health & Illness 26(6): 737–756.CrossRefGoogle Scholar
  2. Baggott, R., J. Allsop, and K. Jones. 2005. Speaking for patients and carers: Health consumer groups and the policy process. Basingstoke: Palgrave.CrossRefGoogle Scholar
  3. Baggott, R., and R. Forster. 2008. Health consumer and patients' organizations in Europe: towards a comparative analysis. Health Expectations 11(1): 85–94.CrossRefGoogle Scholar
  4. Baggott, R., and K. Jones. 2011. Prevention better than cure? Health consumer and patients’ organisations and public health. Social Science & Medicine 73(4): 530–534.CrossRefGoogle Scholar
  5. ____. 2014. The voluntary sector and health policy: The role of national level health consumer and patients’ organisations in the UK. Social Science & Medicine 123: 202–209.CrossRefGoogle Scholar
  6. ____. 2015. The Big Society in an age of austerity: threats and opportunities for health consumer and patients’ organisations in England. Health Expectations 18(6): 2164–2173.Google Scholar
  7. Batt, S. 2014. Who will support independent patient groups? British Medical Journal 349: g6306.CrossRefGoogle Scholar
  8. Beier, K., I. Jordan, C. Wiesemann, and S. Schicktanz. 2016. Understanding collective agency in bioethics. Medicine Health Care and Philosophy 11(3): 411–422.CrossRefGoogle Scholar
  9. Brown, P., and S. Zavestoski. 2004. Social movements in health: An introduction. Sociology of Health and Illness 26(6): 679–694.CrossRefGoogle Scholar
  10. Caron-Flinterman, J.F., E.W. Broerse, and J.F.G. Bunders. 2005. The experiential knowledge of patients: A new resource for biomedical research? Social Science & Medicine 60(11): 2575–2584.CrossRefGoogle Scholar
  11. Chamak, B. 2008. Autism and social movements: French parents’ associations and international autistic individuals’ organizations. Sociology of Health and Illness 30(1): 76–96.CrossRefGoogle Scholar
  12. Cigler, A., and B. Loomis. 1995. Contemporary interest group politics: More than more of the same. In Interest Group Politics, 4th ed. edited by A. Cigler and B. Loomis, 394–398. Washington DC: Congressional Quarterly Press.Google Scholar
  13. Clarke, J., J. Newman, N. Smith, E. Vidler and L. Westermarland. 2007. Creating citizen-consumers: Changing publics and changing public services. London: Sage.Google Scholar
  14. Deakin, N., and A. Wright. 1990. Consuming public services. London: Routledge.Google Scholar
  15. Disch, L. 2012. The impurity of representation and the vitality of democracy Cultural Studies 26(2–3): 207–222.CrossRefGoogle Scholar
  16. Epstein, S. 1996. Impure science: AIDS, activism and the politics of knowledge. Berkeley and Los Angeles: University of California Press.Google Scholar
  17. ____. 2016. The politics of health mobilisation in the United States: The promise and pitfalls of “disease constituencies.” Social Science & Medicine 165: 246–254.CrossRefGoogle Scholar
  18. Forster, R., G. Braunegger-Kallinger, and K. Krajic. 2011. Austrian health consumer groups: Voices gaining strength. In Democratising health, edited by H. Lofgren, M. Leahy, and E. de Leeuw, 143–160. Cheltenham: Edward Elgar.Google Scholar
  19. Fung, A., 2003. Associations and democracy: Between theories, hopes, and realities. Annual Review of Sociology 29(1): 515–539.CrossRefGoogle Scholar
  20. Halpin, D. 2006. The participatory and democratic potential and practice of interest groups: between solidarity and representation. Public Administration 84(4): 919–940.CrossRefGoogle Scholar
  21. Hirst, P. 1994. Associative democracy. Cambridge: Polity Press.Google Scholar
  22. Jones, K., and R. Baggott. 2011. Health consumer groups in the UK: Progress or stagnation? In Democratising Health, edited by H. Lofgren and E. de Leeuw, 30–46. Cheltenham: Edward Elgar.Google Scholar
  23. Jones, K. 2008. In whose interest? Relationships between health consumer groups and the pharmaceutical industry in the UK. Sociology of Health and Illness 30(6): 929–944.CrossRefGoogle Scholar
  24. Keller, A.C., and L. Packel. 2014. Going for the cure: Patient interest groups and health advocacy in the United States. Journal of Health Politics, Policy and Law 39(2): 331–367.CrossRefGoogle Scholar
  25. Lieberman, T. 2016. Groups push pharma agenda under the guise of patient advocacy. Health News Review, February 10. Accessed June 12, 2017.
  26. Long, S. 1999. The tyranny of the customer and the cost of consumerism. Human Relations 52(6): 723–743.Google Scholar
  27. McCurry, P. 2009. People power: Voluntary sector: User voices: “I’m talking from personal experience.” The Guardian, March 4, Society Supplement, 7.Google Scholar
  28. Mold, A. 2014. Making the patient-consumer: Patient organisations and health consumerism in Britain. Manchester: Manchester University Press.Google Scholar
  29. Nicholas, L., and S. Broadbent. 2015. Collective intelligence in patient organisations. London: NESTA.Google Scholar
  30. O’Neill, J. 2001. Representing people, representing nature, representing the world. Environment and Planning C: Government and Policy 19(4): 483–500.CrossRefGoogle Scholar
  31. Opedal, S., H. Rommetvedt, and K. Vrangbæk. 2012. Organised interests, authority structures and political influence: Danish and Norwegian patient groups compared. Scandinavian Political Studies 35(1): 1–21.CrossRefGoogle Scholar
  32. Phillips, A.1995. The politics of presence. Oxford: Clarendon Press.Google Scholar
  33. Pinto, D., D. Martin, and R. Chenhall. 2016. The involvement of patient organisations in rare disease research: A mixed methods study in Australia. Orphanet Journal of Rare Disease 11:2.CrossRefGoogle Scholar
  34. Pitkin, H.F. 1967. The concept of representation. Berkeley and Los Angeles: University of California Press.Google Scholar
  35. Plummer, J. 2010. Alzheimer’s Society defies protest over branch closure. Third Sector. 2 February. Accessed June 20, 2013.
  36. Rabeharisoa, V. 2006. From representation to mediation: The shaping of collective mobilisation on muscular dystrophy in France. Social Science & Medicine 62(3): 564–576.CrossRefGoogle Scholar
  37. Rabeharisoa, V., T. Moreira, and M. Akrich. 2014. Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society. BioSocieties 9(2): 111–128.CrossRefGoogle Scholar
  38. Roberts, C., I. Tyler., C. Satchwell, and J. Armstrong. 2016. Health social movements and the hybridisation of ‘cause regimes’: An ethnography of a British childbirth organization. Social Movement Studies 15(4): 417–430.CrossRefGoogle Scholar
  39. Rogers, A., and D. Pilgrim. 2001. Mental health policy in Britain. Basingstoke: Palgrave.CrossRefGoogle Scholar
  40. Saward, M. 2010. The representative claim. Oxford: Oxford University Press.CrossRefGoogle Scholar
  41. Scambler, G., and D. Kelleher. 2006. New social and health movements: Issues of representation and change. Critical Public Health 16(3): 219–231.CrossRefGoogle Scholar
  42. Schmitter, P. 2002. Participation in governance arrangements: Is there any reason to expect it will achieve “sustainable and innovative policies in a multi-level context?” In Participatory governance, political and societal implications, edited by J.R. Grote and B. Gbikpi, 51–70. Opladen: Leske & Budrich.CrossRefGoogle Scholar
  43. Small, N., and P. Rhodes. 2000. Too ill to talk? User involvement and palliative care. London: Routledge.Google Scholar
  44. Stockholm Network Research Team. 2013. Patient power: What it takes for patient associations to help shape public policy. Stockholm: SNRT. Accessed November 10, 2013.
  45. Stokke, K., and E. Selboe. 2009. Symbolic representation as political practice. In Rethinking popular representation, edited by O. Tornquist, N. Webster, and K. Stokke, 59–78. Basingstoke: Palgrave Macmillan.CrossRefGoogle Scholar
  46. Taylor, V., and N. Whittier. 1992. Collective identity in social movement communities: Lesbian feminist mobilization. In Social perspectives in lesbian and gay studies: A reader, edited by P.M. Nardi and B.E. Schneider, 349–365. New York: Routledge. Google Scholar
  47. Theobald, S. 2012. Cancer’s not pink. The Observer, March 25. Accessed June 2, 2017.
  48. Toiviainen, H., L. Vuorenkoski, and E. Hemminki. 2010. Patients organisations in Finland. Health Expectations 13(3): 221–233.PubMedPubMedCentralGoogle Scholar
  49. van de Bovenkamp, H.M., M.J. Trappenburg, and K.J. Grit. 2010. Patient participation in collective healthcare decision making: The Dutch model. Health Expectations 13(1): 73–85.CrossRefGoogle Scholar
  50. Van Rooy, A. 2004. The global legitimacy game: Civil society, globalization, and protest Houndmills: Palgrave Macmillan.CrossRefGoogle Scholar
  51. Williamson, C. 1992. Whose standards? Consumer and professional standards in health care. Buckingham: Open University Press.Google Scholar
  52. Williamson, C. 2008. The patient movement as an emancipation movement. Health Expectations 11(2): 102–112.CrossRefGoogle Scholar
  53. Wood, B. 2000. Patient power? The politics of patients’ associations in Britain and America. Buckingham: Open University Press.Google Scholar

Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2018

Authors and Affiliations

  1. 1.Health Policy Research Unit, Department of Politics and Public Policy Hugh Aston BuildingDe Montfort UniversityLeicesterUK

Personalised recommendations