Patient and consumer organisations at the European Medicines Agency: Financial disclosure and transparency

Katrina Perehudoff, Teresa Leonardo Alves

    Research output: Book/ReportReportProfessional

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    Background: The transparency criteria adopted by the European Medicines Agency require eligible patient and consumer organisations to disclose the names and contributions of their public and private revenue sources. Despite various transparency initiatives, the exact funding sources of, and amounts received by, eligible organisations remain unclear. This article examines how many patient and consumer organisations eligible to work with the Agency (n=23) received corporate sponsorship between 2006 and 2008 and how much. The article also reports how many organisations met the Agency‟s criteria on financial disclosure.

    Methods: Financial data were retrieved from organisations‟ and pharmaceutical companies‟ websites in January and February 2010, as well as through direct requests for the information placed in March 2010. A method for estimating sponsorship in the absence of reported contributions was developed and applied uniformly.

    Results: Fifteen of the twenty-three eligible organisations received financial sponsorship from corporate sources whilst seven received funding entirely from other sources. We failed to retrieve any financial data or revenue sources for one of the 23 organisations. The annual average corporate contribution per sponsored organisation rose from €185,500 in 2006, to €282,090 in 2007, to €321,230 in 2008. These amounts correspond to 47%, 51% and 57% of organisational average annual revenue, respectively. Fewer than half of the 23 organisations met the Agency‟s financial reporting guidelines.

    Conclusions: This study indicates low compliance with the guidelines which EMA introduced in 2005 to ensure the financial transparency of the organisations working with it. Levels of corporate sponsorship differ greatly between those organisations that receive no financial support and others who rely upon it heavily. The lack of a uniform and detailed reporting system hinders complete public disclosure of the nature, and extent of, corporate sponsorship of these organisations. This study focuses on the issue of corporate sponsorship of patient and consumer organisations active at the EMA. However, these organisations represent only a selection of non-governmental organisations (NGOs) and other stakeholders active in the area of health and pharmaceutical policy in Europe. Thus, further research is called for on financial transparency, and the nature of corporate sponsorship and conflicts of interests of civil society representatives in European health policy making.
    Original languageEnglish
    Place of PublicationAmsterdam
    PublisherHealth Action International
    Number of pages20
    Publication statusPublished - Aug-2010

    Publication series

    NamePaper Series
    PublisherHealth Action International (HAI) Europe


    • patient advocacy
    • medicines regulation

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