The dynamics of patient organizations in Europe

Patient organizations today play a major role in the scientific, economic and
political arenas. They have become the quasi-obliged partners of researchers,
industrialists and political authorities. This book investigates this quite
recent configuration by offering an in-depth exploration of three thematic
issues: To what social and political stakes are patient organizations
confronted as regards the transformation, production, circulation, and
governance of knowledge? The involvement of patient organizations in the
economic world is acknowledged as confrontational, especially when it comes to
relationships with the pharmaceutical industry. To what extent do opposition,
"instrumentalization", or cooperation constitute relevant models if we are to
account for the multifaceted relationships between patient organizations and
economic actors? Patient organisations are the structuring actors of networks,
coalitions, and collectives throughout Europe. What social and political
concerns arise from these particular forms of collective action on a national
or European scale? Each question is first examined through an academic and
grey literature review. Then the emerging topics and critical issues are
identified and discussed, drawing upon exchanges of experiences, viewpoints,
and reflections between actors involved in patients' and users' movements and
social scientists. The dynamics of patient organizations in Europe raises a
number of questions of interest for all actors from the health system, as well
as for social scientists. This book intends to contribute to the reflection on
further research agenda setting and policy-making.