E-health and the performativity of the "health democracy"

Hervé Dumez, Etienne Minvielle


Since at least the 1990s, a movement quoted as the “health democracy,” has set out to establish new rights for patients, and changes current professional practices. Its dynamic can be analyzed through the lens of performativity, a whole wave of research with the aim to understand how a theory or doctrine can feasibly make real what it theorizes and encourages. “Health democracy” intends to reduce the disproportionate distribution of power in doctor/patient relationships. In parallel, different innovations related to the ir- ruption of E-health (social networks, web applications, and other devices) are currently modifying the practices, and thereby reconstructing the relationships between patients and professionals. Based on a corpus analysis, using a scoping review method, this article ex- plores the ways E-health modifies the process of performativity in the “health democracy”. Two effects are identified: a co-production introduced in the classic relationship between patients and healthcare professionals thanks to a better follow-up at distance, and a new form of expertise based on the information circulating on the internet. Each effect develops its own benefits and risks. In order to optimize this new added-value offered by E-health on patient engagement, many managerial consequences must be taken into account. Em- ploying a narrative approach to the dynamics currently at play, it establishes that E-health represents a process of performativity of health democracy by “overflowing”. It also high- lights a risk of counter-performativity: in that if the traditional patient/doctor relationship is less asymmetric, answering to the “health democracy”’s demand may pose another risk related to the use of internet-based information that threats this equilibrium.


Key-words : performativité, e-santé, démocratie sanitaire, engagement du patient, empowerment

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DOI: http://dx.doi.org/10.9876/sim.v22i1.783