Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

The “patient perspective” serves as an analytical tool to present patients as knowing subjects in research, rather than as objects known by medicine. This paper analyses problems encountered with the concept of the patient perspective as applied to long-term mental health care. One problem is that “having a perspective” requires a perception of oneself as an individual and the ability to represent one’s individual situation in language; this excludes from research patients who do not express themselves verbally. Another problem is (...) that the idea of “talk” as a representation of the world ignores the fact that talk is also performative in the world: it requires, at least, the ability to deal with an interview situation. To think up alternative ways of including patients as subjects in research, I develop an approach that takes this performativity as a starting point. Analysing practical situations and activities, I argue that patients enact appreciations, making known what they like or dislike by verbal or non-verbal means in a given material environment, in situations that are co-produced by others. Thus, subjectivity is linked to situations and interactions, rather than just to individual characteristics; to “patient positions,” rather than “patient perspectives.”. (shrink)

This article examines HIV-positive patients’ experiences of treatments within a context characterized by the multiplicity of opinions expressed both by specialists and the public domain. It is based upon a survey of 63 patients encountered in a Paris hospital. The authors demonstrate the contrasts between these patients in terms of two main dimensions: the degree of the patients’ proximity to specialist knowledge, and the level of homogeneousness that the patients attribute to medical know-how. At the point where these two dimensions (...) meet, the article distinguishes between three forms of patient attitude towards treatment; in other words, three ways of simultaneously positioning oneself with regard to the media, associations, doctors and family circles/entourage: resorting to exteriority; self-integration into biomedical institutions; arranging heterogeneous actors. It analyses the transformations relating to the main experience profiles highlighted by sociological studies of other pathologies. (shrink)