Public participation in health: theory, policy and practice in user involvement in cancer-genetics pilots

Martin, Graham Paul (2009) Public participation in health: theory, policy and practice in user involvement in cancer-genetics pilots. PhD thesis, University of Nottingham.

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Public participation is an increasingly prominent policy in the United Kingdom and elsewhere. This thesis locates one example of participation within wider debates about the constitution of contemporary society, changing welfare-state governance, and the challenges of operationalizing such initiatives. It relates the particularities of this case to practical, policy and theoretical questions.

The thesis begins by considering the rise of participation in historical context, relating its aims to social-theoretical commentaries on late-modern society. This framework informs an examination of rationales for participation, an analysis of policy discourses on public involvement in health, and consideration of the challenges of making participation happen.

The remainder of the thesis presents the results of an empirical study of one example of participation: service-user involvement in a programme of pilot cancer-genetics services, managed by the third-sector organization Macmillan Cancer Support. Using interview, observational and documentary data collected over a three-year period, it offers a longitudinal perspective on the practice of involvement, drawing on various actors’ perspectives. Considered over five empirical chapters are competing rationales for involvement put forward by different groups of actors, the micro-processes of involvement, and the varied outcomes of negotiations across the seven pilots studied.

In reconciling the theoretical and policy literatures with empirical findings, the thesis highlights certain tensions. Policy-level ambiguities permit the coexistence of multiple discourses about the purpose of involvement, the identity of those involved, and the influence it should command, resulting in conflict as participation is put into practice. Policies designed to avoid directiveness and facilitate local discretion create dilemmas for those charged with implementation, especially third-sector organizations whose intermediary role means they must reconcile divergent views of diverse stakeholders in participation practice. The result is a situation where pragmatic negotiations take precedence over any theoretical or normative vision for participation in determining its remit, scope and influence.

Item Type: Thesis (University of Nottingham only) (PhD)
Supervisors: Avis, M.
Fitzpatrick, T.
Learmonth, M.
Subjects: R Medicine > RA Public aspects of medicine > RA 421 Public health. Hygiene. Preventive Medicine
Faculties/Schools: UK Campuses > Faculty of Social Sciences, Law and Education > School of Sociology and Social Policy
Item ID: 10677
Depositing User: EP, Services
Date Deposited: 05 Nov 2009 11:31
Last Modified: 14 Oct 2017 12:12

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