深夜亚洲福利久久

European Patients' Organisations in a Knowledge Society (EPOKS)

An EU-FP7 Science in Society Collaborative Project involving researchers from 深夜亚洲福利久久 College Cork, Ecole des Mines de Paris, Lancaster 深夜亚洲福利久久, Durham 深夜亚洲福利久久 and Coimbra 深夜亚洲福利久久 (Portugal).

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

Orla O鈥橠onovan (o.odonovan@ucc.ie)

M谩ire 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鈥� 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鈥� 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鈥� organisations? How and with what consequences are patients鈥� organisations trying to shape the definition, diagnosis, monitoring and treatment of diseases? So far, research on patients鈥� 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鈥� organisations in Ireland, France, Britain and Portugal, active in four fields. These are rare and orphan diseases, maternity services, Alzheimer鈥檚 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鈥� organisations. Very little is known about the kinds of organisations these European coalitions constitute. EPOKS鈥檚 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鈥橠onovan, O., T. Moreira and E. Howlett, 鈥淎lzheimer鈥檚 disease organisations and technologies of 鈥榠ndependent living鈥�: Tracking transformations in patienthood and organisational cause鈥� European Association for the Study of Science and Technology (EASST) Conference 2010 - Practicing Science and Technology, Performing the Social, 深夜亚洲福利久久 of Trento, Italy, 2-4 September 2010.

Edwards, C. and Howlett, E. 鈥淭he new professionals? 鈥楢DHD parents鈥� and the evaluation of alternative therapeutic regimes鈥� Monitoring Parents: Science, Evidence, Experts and the New Parenting Culture. 深夜亚洲福利久久 of Kent, 13^-14 September 2011.

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

O鈥橠onovan, O. 鈥淚rish patients鈥� movements on the move to Europe鈥�, 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鈥� organisations modes of engagement with the pharmaceutical industry (see ). 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鈥檚 disease activism and pharmaceutical policy ' in P. Kennedy and S. Quinn (eds) Ageing and Social Policy in Ireland. Dublin: 深夜亚洲福利久久 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 深夜亚洲福利久久 Press.