Abstract
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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
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.
Baggott, R., J. Allsop, and K. Jones. 2005. Speaking for patients and carers: Health consumer groups and the policy process. Basingstoke: Palgrave.
Baggott, R., and R. Forster. 2008. Health consumer and patients' organizations in Europe: towards a comparative analysis. Health Expectations 11(1): 85–94.
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.
____. 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.
____. 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.
Batt, S. 2014. Who will support independent patient groups? British Medical Journal 349: g6306.
Beier, K., I. Jordan, C. Wiesemann, and S. Schicktanz. 2016. Understanding collective agency in bioethics. Medicine Health Care and Philosophy 11(3): 411–422.
Brown, P., and S. Zavestoski. 2004. Social movements in health: An introduction. Sociology of Health and Illness 26(6): 679–694.
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.
Chamak, B. 2008. Autism and social movements: French parents’ associations and international autistic individuals’ organizations. Sociology of Health and Illness 30(1): 76–96.
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.
Clarke, J., J. Newman, N. Smith, E. Vidler and L. Westermarland. 2007. Creating citizen-consumers: Changing publics and changing public services. London: Sage.
Deakin, N., and A. Wright. 1990. Consuming public services. London: Routledge.
Disch, L. 2012. The impurity of representation and the vitality of democracy Cultural Studies 26(2–3): 207–222.
Epstein, S. 1996. Impure science: AIDS, activism and the politics of knowledge. Berkeley and Los Angeles: University of California Press.
____. 2016. The politics of health mobilisation in the United States: The promise and pitfalls of “disease constituencies.” Social Science & Medicine 165: 246–254.
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.
Fung, A., 2003. Associations and democracy: Between theories, hopes, and realities. Annual Review of Sociology 29(1): 515–539.
Halpin, D. 2006. The participatory and democratic potential and practice of interest groups: between solidarity and representation. Public Administration 84(4): 919–940.
Hirst, P. 1994. Associative democracy. Cambridge: Polity Press.
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.
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.
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.
Lieberman, T. 2016. Groups push pharma agenda under the guise of patient advocacy. Health News Review, February 10. https://www.healthnewsreview.org/2016/02/groups-push-pharma-agenda-under-the-guise-of-patient-advocacy/. Accessed June 12, 2017.
Long, S. 1999. The tyranny of the customer and the cost of consumerism. Human Relations 52(6): 723–743.
McCurry, P. 2009. People power: Voluntary sector: User voices: “I’m talking from personal experience.” The Guardian, March 4, Society Supplement, 7.
Mold, A. 2014. Making the patient-consumer: Patient organisations and health consumerism in Britain. Manchester: Manchester University Press.
Nicholas, L., and S. Broadbent. 2015. Collective intelligence in patient organisations. London: NESTA.
O’Neill, J. 2001. Representing people, representing nature, representing the world. Environment and Planning C: Government and Policy 19(4): 483–500.
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.
Phillips, A.1995. The politics of presence. Oxford: Clarendon Press.
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.
Pitkin, H.F. 1967. The concept of representation. Berkeley and Los Angeles: University of California Press.
Plummer, J. 2010. Alzheimer’s Society defies protest over branch closure. Third Sector. 2 February. http://www.thirdsector.co.uk/alzheimers-society-defies-protest-branch-closure/governance/article/980896. Accessed June 20, 2013.
Rabeharisoa, V. 2006. From representation to mediation: The shaping of collective mobilisation on muscular dystrophy in France. Social Science & Medicine 62(3): 564–576.
Rabeharisoa, V., T. Moreira, and M. Akrich. 2014. Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society. BioSocieties 9(2): 111–128.
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.
Rogers, A., and D. Pilgrim. 2001. Mental health policy in Britain. Basingstoke: Palgrave.
Saward, M. 2010. The representative claim. Oxford: Oxford University Press.
Scambler, G., and D. Kelleher. 2006. New social and health movements: Issues of representation and change. Critical Public Health 16(3): 219–231.
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.
Small, N., and P. Rhodes. 2000. Too ill to talk? User involvement and palliative care. London: Routledge.
Stockholm Network Research Team. 2013. Patient power: What it takes for patient associations to help shape public policy. Stockholm: SNRT. http://www.stockholm-network.org/downloads/publications/Patient_Power_Final_1.pdf. Accessed November 10, 2013.
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.
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.
Theobald, S. 2012. Cancer’s not pink. The Observer, March 25. https://www.theguardian.com/lifeandstyle/2012/mar/25/cancers-not-pink-women-rebelling. Accessed June 2, 2017.
Toiviainen, H., L. Vuorenkoski, and E. Hemminki. 2010. Patients organisations in Finland. Health Expectations 13(3): 221–233.
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.
Van Rooy, A. 2004. The global legitimacy game: Civil society, globalization, and protest Houndmills: Palgrave Macmillan.
Williamson, C. 1992. Whose standards? Consumer and professional standards in health care. Buckingham: Open University Press.
Williamson, C. 2008. The patient movement as an emancipation movement. Health Expectations 11(2): 102–112.
Wood, B. 2000. Patient power? The politics of patients’ associations in Britain and America. Buckingham: Open University Press.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Baggott, R., Jones, K.L. Representing Whom? U.K. Health Consumer and Patients’ Organizations in the Policy Process. Bioethical Inquiry 15, 341–349 (2018). https://doi.org/10.1007/s11673-018-9859-4
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11673-018-9859-4