Neurol Rehabil 2008; 14 (1): 24-30 Schwerpunktthema
»When I was on the ward«: The contribution
of patient narratives to public involvement
in health care decision-making
Centre for Research in Primary and Community Care, (CRIPACC), University of Hertfordshire, UK
Aims: This paper sets out to provide an account of the forms of knowledge and expertise participants brought to a representational form of public involvement in healthcare. The findings are drawn from a two-year ethnographic study of an initiative by an acute hospital in the UK that aimed to involve members of the local community in health care decision-making, through the creation of a patient and public council.
Methods: Data triangulation was achieved by a multi-method approach to the conduct of the fieldwork. The
methods consisted of: a) Observation of all council meetings (42 hours), b) Individual and focus group interviews with councillors (n = 17) and c) Interviews with hospital staff and managers (n = 35).
Results: Councillors drew almost exclusively from their experiential knowledge to construct and advance their agendas for the work of the council. Experiential knowledge and narratives was found to be very influential in constructing the types of contributions from the patient councillors. The patient councillors narratives provided a direct and largely unanticipated challenge to the agendas promoted by the health care workers. This resulted in particular tensions between the patient councillors and professionals concerned with the nature of expertise and the form of patients contribution to health care delivery. The paper outlines these contested areas and describes the ways in which both patients and staff moved to create a shared set of understandings in order to progress the work of the council.
Conclusions: The paper highlights the contribution of personal narratives to public participation and the value
that knowledge derived from personal experiences can have for service development. A key finding relates to the importance of professional repositioning and training vis-à-vis the credibility of patients narratives, as a starting point for shared understandings and the development of improvements in service organisation.
However situated and experiential knowledge cannot be treated as unproblematic, instead an understanding of the partiality of such knowledge needs to be created and consequently where such knowledge can be appropriately drawn upon.
Key words: User involvement in policy and planning, public participation, public empowerment, patient narratives, ethnography