‘Patient Zero’


  • Stephen J. Macdonald
  • David Taylor-Gooby




<i>models of patient involvement</i>, <i>healthcare policy</i>, <i>Patient & Public Involvement (PPI)</i>, <i>NHS volunteers, service users & practitioners motivations</i>


Over the last three years, there has been a major shift in healthcare policy within England. This has radically altered the relationship between General Practitioners (GPs) and patients. This article examines the role of patient and public involvement within the National Health Service (NHS) from the perspective of volunteers and health practitioners. The aim of the study is to explore how different models of patient and public involvement (PPI) are characterised through ideological perspectives which construct the goals and motivations of service users and health practitioners. This article draws on data from a small qualitative study of 16 participants analysing different narratives and experiences of patient and public involvement within the North East of England. The study analyses data from health professionals, including General Practitioners and health managers, and patient volunteers who make up part of a range of different health advisory groups in the NHS. Whilst all respondents agree about the importance of public involvement to assist localised NHS healthcare, it should be noted that what is meant by patient and public involvement in this study is somewhat unclear for people involved in the process. The research concludes by illustrating how practitioners’ and volunteers’ interpretations of patient and public involvement diverge in terms of their expressed motivations, aims, goals and expectations.


Arnstein, S. (1969) A Ladder of Citizen Participation. <i>Journal of the American Institute of Planners</i>, 35, 4, 216-224\nBaggott, R. (2005). A funny thing happened on the way to the forum? Reforming patient and public involvement in the NHS in England. <i>Public Administration</i>, 83, 3, 533-551\nBarnes, C. and Mercer, M. (2003) <i>Research Review on User Involvement in Promoting Change and Enhancing the Quality of Social ‘Care’ Services for Disabled People</i>. Leeds: University of Leeds, Centre for Disability Studies\nBarnes, C., and Mercer, G. (2010). <i>Exploring Disability</i>. Cambridge: Policy Press\nBeresford, P. and Boxall, K. (2012) Service Users, Social Work Education and Knowledge for Social Work Practice. <i>Social Work Education</i>, 31, 2, 155-167\nBryman, A. (2008) <i>Social Research Methods</i>. (3rd ed.) Oxford University Press\nCarmichael, A. (2004) The social model, the emancipatory paradigm and user involvement. in C. Barnes and G. Mercer <i>Implementing the Social Model of Disability: Theory and research</i>. Leeds: The Disability Press (pp.191-207)\nDaykin, N., Evans, D., Petsoulas, C., and Sayers, A. (2007) Evaluating the impact of patient and public involvement initiatives on UK health services: A systematic review. <i>Evidence and Policy</i>, 3, 1, 47-65\nDepartment of Health. (2006) <i>Practice Based Commissioning: Practical implementation</i>. London: HMSO\nDepartment of Health. (2006) <i>Our Health, Our Care, Our Say, A new direction for community services</i>. London: HMSO\nExworthy, M. and Halford, S. (1999) <i>Professionals and Managers in a Changing Public Sector: Conflict, compromise and collaboration</i>. Basingstoke: Open University Press\nFleming, M., L., Parker, E. (2008) <i>Introduction to Public Health</i>. Australia: Elsevier\nForbat, L., Hubbard, G. and Kearney, N. (2009) Patient and public involvement: models and muddles. <i>Journal of Clinical Nursing</i>, 18, 2547–2554\nGilbert, N. (2008) <i>Researching Social Life</i>. London: Sage\nGlasby, J. Peck, E. Ham, C., and Dickinson, H. (2007) <i>Things Can Only Get Better?’ The argument for NHS independence</i>. Birmingham: University of Birmingham\nGreener, I. (2009) Towards a history of choice in UK health policy. <i>Sociology of Health and Illness</i>, 31, 3, 309-324\nGuadagnoli E and Ward P (1998) Patient participation in decision making. <i>Social Science and Medicine</i> 47, 329–339\nHealth and Social Care Act. (2001) London: HMSO\nHealth and Social Care Act. (2012) London: HMSO\nHenderson, A. and R. Petersen (2001) <i>Consuming Health: The Commodification of Health Care</i>. London: Routledge\nHudson, B. (2006): <i>Whole Systems Working A Guide and Discussion Paper, NHS Care Services Improvement Partnership, Integrated Care Network</i>. London: Department of Health\nHunter, D. J., Marks, L., and Smith, K. E. (2010) <i>The Public Health System in England</i>. Cambridge: The Policy Press\nLevitt R. (1980). <i>Consumers, Community Health Councils and the NHS</i>. London: King’s Fund Centre\nMartin, V., Charlesworth, J. and Henderson, M. (2010). <i>Managing in Health and Social Care. (2nd ed.)</i> London: Routledge\nMorris, P., O’Neill, F., Armitage, A., Lane, R., Symons, J., Dalton, E., Gaines, M., Katz, A., and Reed, J. (2007) <i>Moving from Tokenism to Co-production: Implications of learning from patient and community voices in developing patient centred professionalism. P</i>resented at Professional Lifelong Learning: Critical Debates about Professionalism Conference, University of Leeds\nNeedham, C. (2003) <i>Citizen-Consumers: New Labour’s Marketplace Democracy</i>. Catalyst, London\nNHS (1990). <i>NHS and Community Care Act</i>. London: HMSO\nNHS (2010) <i>Equity and Excellence: Liberating the NHS</i>. London: Department of Health\nOliver, M., Sapey. B, and Thomas, P. (2012) Social work with disabled people. (4rd ed.) Basingstoke: Palgrave Macmillan\nPlatt, M. and Staniszewska, S. (2011) Nurses’ role in liaising between patients and service providers <i>Nursing Management</i>, 18, 4, 23-26\nRickard, W and Purtell, R. (2011) Finding a way to pay in the UK: methods and mechanisms for paying service users involved in research <i>Disability and Society</i>, 26, 1. 33-48\nTaylor-Gooby, D. (2012) <i>What Sort of NHS Do We Want?</i>, Cambridge: Searching Finance\nTownsend, P. Phillimore, P., and Beattie, A. (1987) <i>Health Deprivation: Inequality and the North</i>, Beckenham: Croom Helm\nTownsend, P., Phillimore, P., and Beattie, A. (1994). <i>Inequalities in Health in the Northeast Region</i>. Northern Regional Health Authority and the University of Bristol\nTimmins, N. (1995) <i>The Five Giants: A biography of the Welfare State</i>. London: Harper Collins\nWebster, C. (2002) <i>The National Health Service: A political history</i>. Oxford: Oxford University Press\nVincent-Jones, P. (2011) Embedding economic relationships through social learning? The limits of patient and public involvement in healthcare governance in England. <i>Journal of Law and Society</i>, 38, 2, 215-244\n




How to Cite

Macdonald, S. J., & Taylor-Gooby, D. (2013). ‘Patient Zero’. Social Work and Social Sciences Review, 17(1), 5-21. https://doi.org/10.1921/swssr.v17i1.545




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