1. Periodic Report Summary 1 - EPOKS (European Patient Organizations in Knowledge Society)

Abstract: EPOKS aims at comparing patients' / users' organisations in four condition-areas (rare diseases; childbirth; Alzheimer's disease; attention deficit hyperactivity disorder), and in four countries (France, United Kingdom, Portugal, Ireland). 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.

In order to put comparison and integration at the core of the project, partners agreed on a common grid of data collection and data presentation for all national organisations they investigate. Exchanges and intermediary workshops helped to delineate differences and similarities between these organisations, and to reflect on common analytical tools.

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, e.g. in the staging and weighting of various corpus of academic expertise. They are also engaged in a variety of activities whose aim is to sort out and assemble this corpus of certified knowledge with people's experience. Although the modalities through which they operate vary across condition-areas and national contexts, it is fair to say that all organisations are engaged in some sort of 'evidence-based activism'.

Secondly, all organisations develop numerous and complex bonds with other patients' / 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. Besides, networking strategies clearly impact on the nature and scope of causes they stand for. Singularisation versus generalisation of their causes notably depend on alliances they decide to develop or not.

The next period aims at refining analysis of national organisations, and enriching reflection on transversal issues and analytical concepts to foster integration of national case studies. Three main results are expected:

1. For each national organisation, specific actions that illustrate the way it articulates knowledge-related activities to its main missions will be identified and studied in depth.
2. For each condition-area, 'Europeanisation' of POs will be considered. This will consist in: (i) looking at horizontal collaborations and exchanges between national POs; (ii) documenting national POs' participation to actions conducted by European organisations.
3. Cross-condition and cross-national issues will be sorted out and put to the test in order to compare POs' modes of activism, as well as their knowledge-related activities in the shaping of their missions and actions.

The next EPOKS meeting is scheduled in February 2011. Reports on national case studies, including analysis of specific actions developed by national organisations, are expected. A series of cross-national and cross-condition issues, through which national data will be filtered, will also be listed and documented.

Wider societal impacts are also foreseen. We notably expect:

1. To respond to the current dearth of available data and methodologies for cross-national comparison.
2. To clarify the complex interplay between different forms of knowledge and modes of knowledge production, and its effects on the governance of health.
3. To deepen understanding of the role of European coalitions of patients, users and citizens in the governance of knowledge and health issues.
4. To contribute to the development of cooperative research with academics and stakeholders on cross-national and European studies of governance of knowledge and health issues.

Back