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Content archived on 2024-06-18

European Patient Organizations in Knowledge Society

Objective

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.

Fields of science (EuroSciVoc)

CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: https://op.europa.eu/en/web/eu-vocabularies/euroscivoc.

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Keywords

Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)

Programme(s)

Multi-annual funding programmes that define the EU’s priorities for research and innovation.

Topic(s)

Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.

Call for proposal

Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.

FP7-SCIENCE-IN-SOCIETY-2008-1
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Funding Scheme

Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.

CP - Collaborative project (generic)

Coordinator

ASSOCIATION POUR LA RECHERCHE ET LE DEVELOPPEMENT DES METHODES ET PROCESSUS INDUSTRIELS
EU contribution
€ 358 422,00
Address
BOULEVARD SAINT MICHEL 60
75272 Paris
France

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Region
Ile-de-France Ile-de-France Paris
Activity type
Research Organisations
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Total cost

The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.

No data

Participants (4)

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