From Europeanization to European Construction: The role of European patients’ organizations in the shaping of health-care policies

Abstract:

In this article, we examine how European patients' organizations (EPOs) contribute to moving patient advocacy beyond national level organizing and acting. In contrast to Europeanization studies, our contention is that EPOs are not content merely to bring national claims up to the European level nor simply enrich national debates with European issues. Rather, we argue that EPOs engage in a compounded multilevel construction of patients as ‘European individuals’ and of their conditions as matters of concern for Europe.

Based on an analysis of the projects, pronouncements, and politics of three EPOs – European Organization on Rare Diseases, Alzheimer Europe, and Attention Deficit Hyperactivity Disorder Europe – we explore how they form European communities of patients and give shape to health issues they deem important to address at European level. We show that EPOs' involvement in the ongoing construction of Europe relies on their capacities to collect, format, and circulate comparative facts, figures, and data on the functioning of domestic health systems, drawn notably on their members' experiences. This helps them to raise discussions on the need for European health-care policies which articulate a ‘Europe of markets’ and a ‘social Europe’ to the benefit of the patients.

We discuss the form of politics that this EPOs’ ‘evidence-based activism’, as we call it, entails, and conclude with a few thoughts on their influence on the making of European health-care policies.