The participation of stroke survivors in service development and research
: an ethnographic study

Student thesis: Doctoral ThesisDoctor of Philosophy


Policy to involve patients and the public in health service development and medical research has been widely promoted in the United Kingdom on the grounds that this will improve the quality of services and research.

This thesis investigates how stroke survivors were involved in two enterprises: the Transforming Stroke Services Project (TSSP) hosted in the NHS; and an established Stroke Research Programme (SRP) located in a medical school. Data were collected in an ethnographic study conducted over a three-year period in south London.

Drawing on Lukes’ three-dimensional view of power and embodied health movement theory, the thesis considers the implicit claims of user involvement policy that involving the public in the work of professionals will lead to patient empowerment, creation of new forms of knowledge, and a transformation of unequal relations between patients and professionals.

In the TSSP, stroke survivors were positioned as ‘partners’ in the project to modernise stroke services, yet the parameters of the partnership were determined from the outset by professionals. Transformation of patient and professional roles was not a goal that stroke survivors engaged in the TSSP particularly shared, deferring to professionals as ‘the experts’. In the SRP, user involvement activities were similarly determined by professionals, and were adopted to demonstrate policy compliance; user involvement was given salience by being transformed into an object of investigation. Patients’ experiential knowledge was ascribed value of a different order to expert knowledge, which was incompatible with any transformation of traditional patient and professional roles.

User involvement policy is shown to borrow from embodied health movements in terms of discourse and concern with diverse forms of knowledge and action. Yet whilst user involvement policy opens up space for citizen engagement, seeking the resources of service users, it inhibits their capacity for protest; the policy prevents an Embodied Health Movement from forming, but creates a new bureaucratised form of biosociality.
Date of Award1 Jun 2013
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorAngus Forbes (Supervisor) & Christopher McKevitt (Supervisor)

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