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Building collectives via the Web? Information and mobilization on cancer websites

Abstract : In this presentation, we analyse the construction of cancer patient profiles through websites offering information on the disease. We characterize the profiles of cancer patients as they appear on a large number of French websites. Many sites belong to non-profit organizations; others are initiatives by the medical profession; others still are produced by professional organizations linked to the media sphere. Apart from a general review of the competencies and rights associated with patients, on the role of information in determining their capacities to act, and on the place granted to patients and their families to express themselves, the sites related to patient organizations raise specific questions. For instance, what are the forms of engagement pertaining to cancer, in the French non-profit organization movement? In particular, how can the division of tasks that each organization institutes between doctors, patients and itself be characterized, and how does it articulate its support activities with its activism?
In parallel, we examine the role of the Internet in shaping this engagement, and the forms of writing peculiar to the Web. This writing has the characteristic of affording the possibility of a multiplication of enunciators and thus of facilitating encounters and the formation of collectives, that is, individuals talking in the same voice with specific aims. In what way do the uses to which the various "authors" of websites put these possibilities allow for the creation of new knowledge, the emergence of new collectives, and the performation of new actor configurations?
To answer these questions, our presentation is divided into three parts:
- First, we consider the status and format of medical information, as delivered on websites. In particular, we examine the designated enunciators, the authority on which their information is based, and the mise en scène of the context of enunciation. What position is assigned to the recipients of this information? Is there space for uncertainty and debate?
- In the second part we characterize the presence of laypersons' and patients' talk. In particular, we examine its possible link with that of professionals, and that of "science". Are there any forms of articulation between individual experiences and collective forms of expression?
- Finally, in the third part, we analyse the patient profiles that each website constructs in its public, both through the proposed content and through the modalities of action afforded by the site itself. We consider the "patients", their possibilities to act and the competencies attributed to them. How does the site describe a patient's relations with healthcare professionals? What choices does the patient have? What leeway does he or she have to define him- or herself through the site itself? What are the relations between the patient profile, that of the activist and that of the donor of funds?
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Madeleine Akrich, Cécile Méadel, Catherine Rémy. Building collectives via the Web? Information and mobilization on cancer websites. Virtually Informed, Jan 2008, Vienne, Austria. pp.13-40. ⟨halshs-00397356⟩

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