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European Patient Organizations in Knowledge Society


Start Date
End Date
Total Funding
€ 1 129 013
Funding Programme
European Countries Involved
The last two decades have witnessed the increasing role of patient, user and civil society organizations (POs and CSOs) in the production of knowledge on diseases and health problems. Rich and detailed studies have shown that this phenomenon entails new forms of activism. It also questions the modes of governance of knowledge, as well as the role of knowledge in the governance of health and medical issues. Does lay knowledge stand on an equal footing with expert knowledge? How do different stakeholders in the domain of health and medicine consider experiential knowledge brought to the fore by POs and CSOs? So far, research on POs and CSOs’ involvement into the production of knowledge has mainly focused on case studies. Few comparative studies across national contexts and condition areas 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 national organizations in France, Portugal, the U.K and Ireland, active in four conditions areas. These are the fields of rare and orphan diseases, childbirth issues, Alzheimer’s Disease, and ADHD (Attention Deficit and Hyperactivity Disorder). EPOKS will investigate and compare the modes of interaction and cross-fertilization between different forms of knowledge across these national contexts and condition areas. EPOKS will also address an important phenomenon that has received little attention until now: the multiplication of European coalitions of POs and CSOs in the domain of health and medicine. Very little is known on the types of organizations that these European coalitions actually constitute. EPOKS’s second objective is to document and analyze the role of European coalitions in the shaping of certain modes of governance of knowledge, as well as certain forms of know-how that enforce POs and CSOs’ empowerment, and help to foster their capacity to engage with medical research and health issues in their own countries.
Project partners
University Of Durham
University Of Lancaster
Centro De Estudos Sociais
University College Cork - National University Of Ireland
Association Pour La Recherche Et Le Developpement Des Methodes Et Processus Industriels
Alzheimer Europe's database on research projects was developed as part of the 2020 Work Plan which received funding under an operating grant from the European Union’s Health Programme (2014–2020).