‘Europe of patients, Europe for patients’: the Europeanization of healthcare policies by European patients’ organizations

This article considers how EPOs contribute to Europeanization from below and its promises. Based on an analysis ofthe projects, pronouncements and politics of three EPOs – EURORDIS (European Organization on Rare Diseases), Alzheimer Europe, and ADHD Europe (Attention Deficit Hyperactivity Disorder) –, we investigate their role in the Europeanization ofpatient advocacy, moving it beyond national level organizing and acting. We also explore EPOs’ role in Europeanization bypatient advocacy, their contribution to debates and policies on healthcare at European level. Our argument is that Europeanization from below does not consist merely of bringing national claims up to the European level, nor simply enriching national debates with EU issues. Crucially, it also entails a compounded multilevel process whereby EPOs give shape to health issues they deem important to address at European level, and build European communities of patients.

This approach, which echoes Delanty and Rumford’s (2005) questioning on the construction of Europe, is particularly relevant here. Indeed, healthcare remains the preserve of Member States, which implies that EPOs have to form European communities of patients and define the causes they stand for as European for them to effectively and meaningfully act at European level. This is what we show in the first section, drawing on interviews with representatives and staff members of these organizations, website and document analysis, workshops, conferences and events that they organized over the three year duration of our research project. In the second section, we turn to the forms of activism that EPOs develop and the Europe for patientsto which they give rise. We highlight their intensive activity for producing facts, statistics and indicators in order to calibrate and justify their intervention at the crossroads of the ‘Europe of markets’ and a ‘social Europe’. This ‘evidence-based activism’, as we may call it, points to the importance of metrological activity for the making of Europe, as Barry (2001) has demonstrated. In the conclusion, we revert to the promises of Europeanization from below and if and how they are advanced by EPOs.