From Europeanization to European Construction

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.

Key words:

• European patients' organizations
• rare diseases
• Alzheimer's disease
• attention deficit hyperactivity disorder
• Europeanization
• European construction

Acknowledgments

This article draws on European Patients’ Organizations in Knowledge Society (EPOKS), a European-funded project supported by the European Commission Science in Society Program [SIS-CT-2009-230307], with partners from Mines-ParisTech, France; Coimbra University, Portugal; University College Cork, Ireland; and Lancaster University and Durham University, UK. All individual members of EPOKS project contributed data and analysis that serve as the basis of this article. Information on the project is available on http://www.csi.ensmp.fr/WebCSI/EPOKSWebSite/. We would like to thank the representatives and staff members of the four organizations we studied for their time and interest in our project. We are also grateful to the anonymous reviewers for their comments and suggestions.

Notes

1. Notes from ethnographic observation of the twentieth Alzheimer Europe Conference, ‘Facing Dementia Together’, 30 September–2 October 2010, Luxembourg.

2. Alzheimer Europe's Strategic Plan 2006–2010. See http://www.alzheimer-europe.org/

3. Interview with the executive director of EURORDIS.

4. This concept is delineated in a 14-page statement published by EURORDIS in 2005, entitled: ‘Rare Diseases: Understanding this Public Health Priority’.

5. Rare diseases have prevalence lower than 1/2000 or 5/10,000. To date, close to 6000 rare diseases have been recorded in the world. Eighty percent of them are of genetic origin.

6. Interview with the executive director of EURORDIS.

7. Interview with a board member of ADHD Europe, 13 October 2010.

8. Knowing Me, Knowing You: Diagnosis and Early Intervention, undated: 21.

9. See http://www.alzheimer-europe.org/EN/Policy-in-Practice2/Paris-Declaration.

10. Presentation at Shared Priorities. The Dementia Agenda in Europe and Ireland, 17 June 2011, Dublin.

11. Interview on 8 April 2011.

12. http://www.adhdeurope.eu/adhd-europe/objectives.html. Accessed 24 January 2010.

13. This issue emerged at the Annual General Meeting of the organization in 2009 (interview with ADHD Europe board member, 13 October 2010).

14. Interview with the vice president of a small French rare disease patients’ group.

15. http://europa.eu/legislation_summaries/internal_market/single_market_for_goods/pharmaceutical_and_cosmetic_products/l26026_en.htm

16. Notes taken during the EURORDIS Membership Meeting entitled ‘The voice of rare diseases patients in national plans for rare diseases’ held in Amsterdam in May 2011.

Additional information

Notes on contributors

Vololona Rabeharisoa

Vololona Rabeharisoa is a professor of Sociology at Mines-ParisTech and a senior researcher at Centre de Sociologie de l'Innovation. Her main research interests are in science and technology studies, notably sociology of biomedicine, in disability studies, and in social movements analysis. She has extensively published on patients' organizations' engagement in biomedical research and in the governance of health, including a book co-authored with Michel Callon, Le Pouvoir des malades. L'Association Française contre les Myopathies & la recherche (Paris, Presses de l'Ecole des mines, 1999), and an edited volume with Madeleine Akrich, Joao Arriscado Nunes, and Florence Paterson, The Dynamics of Patients' Organizations in Europe (Paris, Presses de l'Ecole des mines, 2008).

Órla O'Donovan

Órla O'Donovan is based in the School of Applied Social Studies, University College Cork, Ireland, where much of her teaching and research centers around questions about how democracy can be deepened, the tensions between democracy and expertise, and how the production and use of science and technology for public purposes can be promoted. Books she has co-edited include Mobilising Classics: Reading Radical Writing in Ireland (Manchester University Press, 2010) and Power, Politics and Pharmaceuticals (Cork University Press, 2008).