Community Research and Development Information Service - CORDIS

FP7

Periodic Report - EPOKS (European Patient Organizations in Knowledge Society)

Project ID: 230307
Funded under: FP7-SIS

Abstract

This is the periodic report for the EPOKS (European patient organizations in knowledge society) project. EPOKS aims at comparing patients' and users' organisations in four condition-areas (rare diseases, childbirth, Alzheimer's disease, attention deficit hyperactivity disorder), and in four countries (France, Ireland, Portugal and the United Kingdom). It notably intends to analyse the ways these organisations articulate patients' and users' experience to academic bodies of expertise in the shaping and implementation of their missions and actions.

Two remarkable communalities have already been identified, that will be searched in depth in the next periods of the project.

Firstly, data collected so far show that all organisations are involved in knowledge-related activities. They are also engaged in a variety of activities whose aim is to sort out and assemble the corpus of certified knowledge with people's experience. Secondly, all organisations develop numerous and complex bonds with other patients' and users' organisations, with medical and health institutions, with political authorities, at national as well as European levels. In particular, national organisations within the same condition-area have many formal and informal relations through which experience, political capacities, as well as modes of activism circulate.

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