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The dynamics of patient organizations in Europe

Madeleine Akrich
João Nunes
Florence Paterson
et al.


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1MEDUSE was a Specific Support Action, funded by the European Commission Sixth Framework Programme, and coordinated by ARMINES-Ecole des mines (Paris, France)1. MEDUSE was conceived of as a cooperative action, involving social scientists and various stakeholders in the domain of health and medicine. At a more general level, MEDUSE contributed to a series of European actions whose objectives are to enhance collaboration between researchers and civil society organizations.

2The underpinning rationale for MEDUSE was to open up dialogue between social scientists and non-academic actors, and to conduct collective reflection on issues of high political relevance. Three issues were put on MEDUSE agenda:

  • The dynamics of patients' organizations in Europe

  • The emergence of new technologies and responsibilities for healthcare at home across diverse European systems and cultures

  • Cross-national and European perspectives on health safety agencies.

3This book offers an insight into exchanges that took place during a two-day conference on the dynamics of patient's organizations in Europe.

4The aim of the conference was to discuss actual practices that actors are developing and problems they are confronting, and to draw on exchanges for setting a research agenda on questions that need further consideration. The conference was conceived of as a participative event. This meant that sharing of experiences between participants was privileged. To prepare the event, the strategy used by the conference organizers included firstly a review of the “state of the art” on the issue, drawing upon selected academic and “grey” literature. However, the conference was not just designed to reflect the current state of knowledge, but also to identify ways in which that knowledge can be examined, exchanged, and transferred across and within different groups for whom the issue is of interest. It further aimed to identify questions which have, to date, received only limited attention. To achieve this, the conference organizers conducted a series of focus groups gathering ten to fifteen participants around a series of themes drawn from the “state of the art”. These focus groups helped to draft a “policy paper”, mixing academic knowledge and non-academic concerns, that served as a basis for the conference. This “policy paper” was circulated to participants in advance of the event. Besides, a few speakers were asked to offer introductory statements, by expanding on the “policy paper”.

5The conference was organized around the three themes we previously identified during the preparation phase. Each theme was introduced by speakers on a plenary session. To render the event as participative as possible, the audience was divided into three randomised discussion groups. The theme was then discussed in the three groups (the three groups run simultaneously). Each group had a facilitator, as well as a respondent whose role was to keep notes on the discussion and, close to the end of the session, to provide a summary of the content of the discussion. The facilitator allowed next a short period of time for the participants to comment on the summary.

6These sessions were extremely successful. The discussions tended to produce interesting examples and counter-examples relating to the themes under discussion. The discussions were always lively and stimulating. The groups were meant so that participants eventually met everyone, thus facilitating the best possible sharing of ideas across disciplines, nationalities and backgrounds. The conference ended up with a closing plenary session, comprising three papers from persons who have in-depth experience/expertise of working with patient organizations, in research institutions or administrations and whose “ profile” is contrasted.

7Permission was requested from participants to digitally record the sessions and to use quotations from these recordings in this book, if appropriate. We would like to address our warmest thanks to them all, for their enthusiasm and invaluable inputs.

8The structure of the book reflects the organization of the conference. For each of the three themes, it comprises an overview based on the analysis of literature, followed by the papers presented during the plenary session and which are collected in a «Preliminary reflections» part; then, a synthesis of the discussions that occurred in each group is presented (except for the second group in the third session, due to technical problems with the recordings). The fourth part comprises the contributions presented during the closing plenary session. In a last section, we highlight the main conclusions that can be drawn from the conference and present recommendations for research agenda setting and policy making.

9This event was prepared by Madeleine Akrich, Florence Paterson, and Vololona Rabeharisoa (CSI, Mines Paritech) and João Arriscado Nunes, Marisa Matias, Angela Marques Filipe (CES, Coimbra university) for the European Commission Sixth Framework Programme Specific Support Action, MEDUSE (Governance, Health & Medicine. Opening dialogue between social scientists and users).

© Presses des Mines, 2008

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