Paper short abstract:

Flux and Flu: Configuring Patients and the Public in Epi/Pandemics. This paper explores the tensions and paradoxes inherent in governing discourses surrounding patients and user groups in relation to public understanding, risk, trust and current clinical research of global infectious diseases.

Paper long abstract:

This paper considers the relationships between a nexus of stakeholders, namely academics, big pharma, clinicians, regulators and policy makers, and crucially, the institutional positioning of 'publics' and patients. Dual concepts of risk and trust have long been recognised as central to this set of actors but become acutely relevant in light of changing EU policies concerning clinical trials and data protection legislation coming into force. When coupled with nascent models of conducting clinical trials in context of a public awareness of newly emerging global infectious diseases such as Ebola, Bird flu, Swine flu and H191 it represents a time of cultural ferment. These rapid changes sit uneasily with the traditional patient /doctor relationship of trust (notwithstanding the ambivalence attached to that) at a time when it needs bolstering.

PREPARE, a European research consortium of social scientists and clinicians aims to identify potential barriers to conducting epi/pandemic research. In addition to professional stakeholders) from several Member States (MS), being interviewed via, 1) an on-line survey, 2) secondary data on clinical trial authorisation, 3) ethical approval processes in each MS and via a series of in depth ethnographic style interviews we also included participant observation data from both conducting a workshop and participating in conferences and meetings in associated fields.

A discussion of this data considers the tensions and paradoxes between the burning issue of public involvement and the need to find robust ways of negotiating trust in context of a history and legacy of more instrumental, tokenistic approaches to public involvement.