European Patients' Organisations in a Knowledge Society (EPOKS)

An EU-FP7 Science in Society Collaborative Project involving researchers from University College Cork, Ecole des Mines de Paris, Lancaster University, Durham University and Coimbra University (Portugal).

Staff from the School of Applied Social Studies who are working on this project:

Orla O’Donovan (o.odonovan@ucc.ie)

Máire Leane (m.leane@ucc.ie)

Claire Edwards (claire.edwards@ucc.ie)

Etaoine Howlett (E.Howlett@ucc.ie)

The last two decades have witnessed the increasing prominence of patients’ and health advocacy organisations in the production and circulation of knowledge on diseases and health problems. Rich and detailed studies have shown that this phenomenon entails new forms of health activism. It has also highlighted patients’ organisations efforts to shape modes of governance of knowledge, as well as the role of knowledge in the governance of health and medical issues. Questions that have been pursued include - how do different actors in various health and medical domains consider the experiential knowledge brought to the fore by patients’ organisations? How and with what consequences are patients’ organisations trying to shape the definition, diagnosis, monitoring and treatment of diseases? So far, research on patients’ organisations involvement in the production of knowledge has focused mainly on case studies. Few comparative studies across national contexts and condition areas or fields of activism are available. This is where EPOKS seeks to make an original contribution. It aims at deepening the understanding of similarities as well as differences between patients’ organisations in Ireland, France, Britain and Portugal, active in four fields. These are rare and orphan diseases, maternity services, Alzheimer’s disease and Attention Deficit and Hyperactivity Disorder (ADHD). EPOKS will investigate and compare the modes of interaction and cross-fertilisation between different forms of knowledge (e.g. experiential and credentialised) across these national contexts and condition areas or fields of activism.

EPOKS will also address an important phenomenon that has received little attention until now: the burgeoning of European coalitions of patients’ organisations. Very little is known about the kinds of organisations these European coalitions constitute. EPOKS’s second objective is to document and analyse the role of European coalitions, especially in respect of the ways they foster the capacity of their member organisations to participate in the production and circulation of knowledge about health and medicine. 

Work on the EPOKS project began in February 2009 and will continue until 2012.

Recent conference presentations:

O’Donovan, O., T. Moreira and E. Howlett, “Alzheimer’s disease organisations and technologies of ‘independent living’: Tracking transformations in patienthood and organisational cause” European Association for the Study of Science and Technology (EASST) Conference 2010 - Practicing Science and Technology, Performing the Social, University of Trento, Italy, 2-4 September 2010.

Edwards, C. and Howlett, E. “The new professionals? ‘ADHD parents’ and the evaluation of alternative therapeutic regimes” Monitoring Parents: Science, Evidence, Experts and the New Parenting Culture. University of Kent, 13^-14 September 2011.

Howlett, E. “Top-down/bottom-up? The pursuit of dementia strategies at national and European level” Ageing Globally, Ageing Locally. CARDI Conference, Dublin, 2- 3 November 2011.

O’Donovan, O. “Irish patients’ movements on the move to Europe”, New Agendas in Social Movement Studies. NUI Maynooth, 26 November, 2011.

Previous research on health activism

Previous research on health activism undertaken by staff in the School of Applied Social Studies includes a Royal Irish Academy-funded study that investigated Irish patients’ organisations modes of engagement with the pharmaceutical industry (see http://www.ria.ie/committees/tsrp/fund.html). Publications from that study include:

O'Donovan, O. 2007. 'Corporate colonization of health activism? Irish health advocacy organizations' modes of engagement with pharmaceutical corporations', International Journal of Health Services, 4, 37, 711-733.

O'Donovan, O. 2008. 'Alzheimer’s disease activism and pharmaceutical policy ' in P. Kennedy and S. Quinn (eds) Ageing and Social Policy in Ireland. Dublin: University College Dublin Press.

O'Donovan, O. 2009. 'Pharmaceuticals, progress and psychiatric contention in early 21st century Ireland' in M. Cronin, P. Kirby and D. Ging (eds) Transforming Ireland: Challenges, Critiques, Resources. Manchester: Manchester University Press.