in the figure of the expert patient. Based on a comprehensive empirical approach conducted through semi-directive interviews with expert patients, the reflection presented returns to the passage from a so-called paternalistic, authoritarian and top-down medicine to a so-called participatory medicine, sharing skills between health professionals and nonprofessionals, and supported in France by a legal arsenal that, since the Kouchner Act of 2002, encourages the patient to become a co-producer of the care he or she receives. So, how does digital communication contribute to this participatory injunction aimed at patient empowerment? Hélène Romeyer supports the hypothesis of a correlation between the professionalization of expert patients, whose role in institutions and other healthcare organizations is becoming central (notably as a vector of therapeutic education) and the mastery of digital tools. The profession of the expert patient would therefore be nourished mainly by strong skills in digital communication. From then on, the figure of the expert patient renews the issue of the patient’s digital work, already addressed by Anne Mayère in Chapter 3, by insisting not on its invisibility, but on its recognition. This is not without repositioning the issues of digital literacy at the center of the reflection on the empowerment of a patient who we want to be as involved as possible in his or her healthcare journey.
Following this overview of the sociotechnical questions inherent to the figure of the expert patient, Stéphane Djahanchahi, Olivier Galibert and Benoit Cordelier propose, in Chapter 7, to continue the categorization of digital expertise in health. The aim is to understand the new mechanisms for mediating digital knowledge, which is now combined in the plural. Based on an ethnography of several online communities bringing together the actors involved in therapeutic cannabis (patients, cannabis growers, promoters of alternative medicines, etc.), the three authors update strategies for the recognition of an intra-community expertise deployed on the basis of a strong opposition with expert biomedical knowledge. Social logics of legitimization thereby emerge, produced in an info-communicational context more or less marked by an idealization of the model of the virtual or online community constituted around values of altruism, generosity and social esteem.
The last chapter of our book, Chapter 8, offers a final look at how digital mediations are being established in online health communities. Using an original semantic method for extracting conversational traces on the Doctissimo health forum, Damien De Meyere proposes an original mapping of lay expertise. For the author, lay health knowledge is divided online according to three categories of knowledge and skills acquired and shared: emotional expertise, which is acquired through interactive practices marked by empathy, interactional expertise (which sanctions users who frequently take part in more informal discussions not directly related to a pathology) and, finally, lay expertise (related to an experiential mastery of medical knowledge). While the latter form of expertise is often the most recognized and most studied, this last contribution to our overview of digital health communication shows the extent to which there is still a need for a holistic approach to online interactions. Digital health expertise must also be understood both within and beyond the realm of health knowledge. Mastering SICDs, being able to invest in interaction spaces, and being able to develop its own expression of an ethics of care are all elements that contribute to this digital lay expertise.
Introduction written by Benoit CORDELIER and Olivier GALIBERT.
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