EPOKS

European Patient Organizations in Knowledge Society

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 Obiettivo del progetto (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.'

Introduzione (Teaser)

Studying the quality of knowledge that emerges from patient-led organisations can contribute to improving health governance and to creating a stronger European health system.

Descrizione progetto (Article)

Patient organisations for different types of illnesses have collected information on diseases since World War I. As information technology progresses and these organisations become more sophisticated, they are actively participating in producing and circulating knowledge on diseases. The EU-funded project 'European patient organisations in knowledge society' (EPOKS) investigated the types and levels of knowledge disseminated by patient organisations.

Specifically, the project looked at illnesses in four areas, namely childbirth, rare diseases, Alzheimer's and attention deficit hyperactivity disorder. It conducted a comparative analysis supported by intensive data collection and interviews, focusing on related organisations' expertise and how this impacted governance of European global strategies on specific diseases. The study was conducted in Ireland, France, Portugal and the United Kingdom.

By examining the types of knowledge collected, such as biomedical, social, judicial or institutional, the project team identified how the organisations help raise key health issues. It also revealed how the information impacted certain issues and highlighted common challenges that these organisations face in promoting their causes.

As patient organisations provide added value to medical expertise and health issues, the project team published reports for enriching methodological discussion on comparative studies of these organisations. It outlined the dynamics between forms of knowledge and effects on governance of health, helping to identify organisations' abilities in collecting knowledge and contributing to health governance.

Another important project result was better understanding these organisations' role in Europeanisation of health policies, helping to build a Europe 'of patients and for patients'. In effect, EPOKS strengthened cooperative research with academics and stakeholders on governance of knowledge and health issues, underlining how these organisations could offer a unified approach to improving health systems.

In 2011 the project team disseminated its findings through a conference held in the United Kingdom titled 'Health Activism in Europe today'. The event emphasised similarities and differences among patient organisations, helping to articulate policy statements on governance of knowledge and health. If harnessed properly, the knowledge emanating from patient organisations will help contribute significantly to a more inclusive and interactive health system.