The article documents and analyzes patients organizations- and groups of activists’ “evidence-based activismâ€, and the compound dynamic interplay between politics of illness and politics of knowledge it entails in the four condition areas studied: ADHD, Alzheimer, rare diseases...

Examines how groups representing children with Attention Deficit Hyperactivity Disorder (ADHD) in France and Ireland engage within this contested medical domain, and challenges the frequently made association between the process of medicalisation and de-politicisation.

Transcribes a dialogue on the evolution of actor-network theory.

This article proposes the notion of ‘evidence-based activism’ to capture patients’ and health activists’ groups’ focus on knowledge production and knowledge mobilisation in the governance of health issues. It shows how these groups engage with, and articulate a variety of credentialed...

Highlights the emergence of a "hybrid collective model" of collaboration between patients and experts through a systematic study in the field of rare diseases in France and Portugal, with attention to the reflexive work carried out by patients' organizations on the notion of rareness.

In light of debates about the relationship between interests and scientific expert judgments, and the potential for declarations of conflict of interest (COI) to minimize corporate bias, we reviewed the approach to COI in 3 European drug regulatory bodies. These bodies were the Irish Medicines...

How, and to what extent, do patient organisations renew traditional forms of social participation and protest? This question is examined, drawing on a socio-historical case study of the Association Française contre les Myopathies--French Muscular Dystrophy Organisation (AFM). The originality of...

The past few decades have witnessed the increasingly active participation of patient organisations in research activities concerning them. They contribute substantially to the funding of scientific and clinical research. More importantly, certain patient organisations take strategic decisions...

From a perspective informed by science and technology studies, the authors propose to establish a general diagnosis on the regulation of publication practices and suggest methods of analysis by drawing on old and recent cases that have been questionning research integrity.