The Patient & Consumer Voice and Pharmaceutical Industry Sponsorship
(2011; 35 pages)

Given the ever expanding role of civil society groups in advocating for changes in health policy, the aim of this study was to explore whether there exists any association between patient and consumer organisations' financial sponsorship from the pharmaceutical industry and their positions on the European Commission' s legislative proposal on Information to patients. This research specifically surveyed organisations' opinions on four aspects of this legislative proposal: the type of medicines information that citizens need; the role of the pharmaceutical industry as an information provider; the regulation of information generated by the industry; the channels through which this information should be provided. Policy positions were elicited through a self-administered, structured questionnaire sent to 22 European patient and consumer organisations (response rate 55%, n=12) in 2009 and through an analysis of their policy documents published after 2006 (n=14). Two external research assistants analysed the blinded policy documents using a separate survey tool. Financial data was retrieved for sponsorship received in 2008 from public sources, the websites of sponsoring companies and through direct request. The questionnaire responses demonstrated that most organisations (n=10) agreed that there is a need for better access to independent and comparative information, and that information generated by the pharmaceutical industry should be approved by drug regulatory authorities before publication. An association was observed between receiving sponsorship and support for an expanded role of the pharmaceutical industry as an information provider about its pharmaceuticals. Organisations that received sponsorship also supported new modes of communicating that could be opened up by the Information to patients legislative proposal, specifically information provided through brochures and leaflets, over the internet and on CD-ROMs. Findings from the analysis of policy documents mirrored the opinions expressed in the questionnaire about the type of information that citizens need and the role of the industry as an information provider. However, the level of technical detail in the policy documents did not yield sufficient data to draw strong conclusions about organisations' opinions on the regulation of this information and appropriate dissemination channels. This study suggests that corporate sponsorship may be associated with civil society perspectives on specific policy debates. The formation of pharmaceutical policy at the EU level relies on a multi-stakeholder approach where each stakeholder group is given an opportunity to express their unique perspective. These findings suggest that a financial relationship between commercial and civil society groups could jeopardise the uniqueness of the patient and consumer perspective and threaten the integrity of the multi-stakeholder format and the policy formulation process. It is imperative to maintain the distinct view of each stakeholder in order to make balanced decisions about pharmaceutical regulation and health policy.

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