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Research

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European Patient Organisations in the Knowlege Society (EPOKS)

A research project of the School of Applied Social Sciences, part of the Health, Society and Policy research group.

Background

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.

Funding

The project is funded by the following grant.

  • European Patient Organizations (£56131.60 from European Commission)

Aims

1. Characterization of patient, user, and civil society organizations’ modes of involvement in the production of knowledge and expertise
2. Cross-national comparison between patient, user, and civil society organizations’
modes of engagement in the production of knowledge
3. Mapping and analysis of the network of expertise and issues to which patient, user, and civil society organizations participate
4. Description of the dynamics of the “Europeanization” of lay organizations, and its
effects on the governance of knowledge and the place of knowledge in the governance of health and medicine

Durham in collaboration with Cork U. (Work Package 3)
a) To describe and characterize forms of contribution of Alzheimer’s Disease organizations in Ireland and United Kingdom to the production of knowledge.
b) To analyze the effects of this contribution on the conflicts and/or the cross-fertilization between expert and lay knowledge in the definition of treatments and care for dementia
c) To describe and analyze forms of Europeanization of these organizations either by the establishment of horizontal relationships between them or by their participation in Alzheimer’sEurope.

Methods

Documentary and interview data supporting the following activities:

  • Analyzing patient, user, and civil society organizations’ activities related to the generation and the dissemination of knowledge. We will pay close attention to emerging forms of participation of POs/CSOs into the production and circulation of knowledge.
  • Describing national, as well as European networks of expertise and issues in which they participate or are an interested part of.
  • Analyzing actions they undertake, for which the issue of governance of knowledge, as well as the issue of knowledge in the governance of health, are critical.
  • Describing the role of pan-European coalitions in the shaping of collective actions aimed a the production and circulation of knowledge, as well as in the transformation of national organizations’ forms of activism.

Staff

From the School of Applied Social Sciences

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