*** UPDATE ***
I am working at this project as co-investigator, with A. Casilli (coordinator, ParisTech), with whom I initially conceived it; C. Fischler (Principal Investigator, CNRS, Paris) and a large, multidisciplinary team of researchers. We have obtained funding from the French Agency for National Research (ANR), for 2010-2013 [funder's presentation, in French].
We study a controversial Internet phenomenon bringing together persons with anorexia nervosa, bulimia nervosa (“ana-mia”, in web jargon) and other eating disorders. In the early 2000s, its sometimes proactive stance towards anorexia and bulimia, going as far as to advocate them as life choices rather than diseases, took public opinion by storm. However the very complexity of online interactions, which also provide a great deal of health advice and support to participants, calls for a better understanding of the role of computer-mediated communication in the spread and maintenance of eating disorders.
We use social network analysis, online ethnographies and computer simulation to gain insight into this phenomenon. We have conducted a sociological comparative study of anorexic and bulimic Web users in two linguistic and institutional contexts, French and English, mapping their online social networks relative to their face-to-face social interactions.
We are now in the process of analysing the multiple sets of data that we have collected:
- web mapping, producing a cartography of about 600 websites per country per year (of which a picture is just above, representing a section of the French blogosphere in 2012);
- 284 responses to an online survey of persons with eating disorders, including a graphical application to elicit personal network data (pictured at the top of the page);
- in-depth qualitative interviews of a sub-sample (37) of them.
Instead of writing a paper report, we release our results online as weekly posts in the Anamia website blog, both in French and in English. We do so in full respect of open access principles: not only making the results of publicly funded research available to all without restriction, but also using a format and language that makes them understandable both to fellow researchers and to a large public of non-specialists including journalists, health professionals, and persons with eating disorders themselves (especially those who, by participating to the study, made our analysis possible at all).
We presented the bulk of our first results in a one-day symposium on “Understanding Pro-Ana: Body, Networks and Nutrition” that we organised at Bibliothèque Nationale de France, Paris, 14th December 2012. More information (including pictures and detailed minutes… but in French!) is accessible here.
Our publications so far:
P. Tubaro, A.A. Casilli, L. Mounier (2014, in press). Eliciting personal network data in web surveys through participant-generated sociograms. Field Methods, 26 (2) [pre-print].
A.A. Casilli, F. Pailler, P. Tubaro (2013). Online networks of eating-disorder websites: why censoring pro-ana might be a bad idea. Perspectives in Public Health 133: 94-95 [publisher's version, restricted].
A. Casilli, P. Tubaro, P. Araya (2012). Ten years of Ana. Lessons from a transdisciplinary body of literature on online pro-eating disorder websites. Social Science Information / Information pour les Sciences Sociales, 51 (1): 121-139 [publisher's text, restricted].
Some less academic publications:
A. Casilli, F. Pailler, P. Tubaro (2012). Le phénomène pro-ana : panique morale et effets paradoxaux de la censure. Le Monde blogs (Internet Actu), 16 novembre [full text].
Some of our presentations are accessible online (though for reasons of confidentiality and respect of the population under study, some images have been withdrawn):
P. Tubaro, L. Mounier. Sociability and support in online eating disorder communities: Evidence from personal networks. British Sociological Association annual conference, London, 4 April 2013 [fulltext] [slides].
P. Tubaro, A. A. Casilli, F. Pailler. Communautés Internet de personnes atteintes de TCA: une approche sociologique. Doctissimo, Paris, 8 March 2013 [slides, in French].
P. Tubaro. Sociability and support in online eating disorder communities: Evidence from personal networks. Seminar, University of Manchester, 20 February 2013 [slides]
A.A. Casilli, F. Pailler, P. Tubaro. Survival and turnover in ana-mia online networks. An in vivo study of the effects of moral panic surrounding eating disorder websites. Just-In-Time-Sociology conference, Lausanne, 4 December 2012 [full text].
A.A. Casilli, L. Mounier, P. Tubaro. Connectedness and support in online ‘pro-ana’ social networks, XXXII conference of International Network for Social Network Analysis, Los Angeles, 18 March 2012 [slides].
A.A. Casilli, P. Tubaro. Problematizing pro-ana: a study of eating disorders on the web, 43rd conference of the Medical Sociology Group of British Sociological Association, University of Chester, 15 September 2011 [slides].
P. Tubaro, A.A. Casilli, C. Fraïssé, E. Masson, L. Mounier, J. Rouchier (2011), Studying eating disorders in the social web: an online ethnography with social network analysis [blog post]. British Sociological Association annual conference, LSE, London, 6 April 2011.
P. Tubaro, A.A. Casilli, C. Fraïssé, E. Masson, L. Mounier, J. Rouchier, Eating disorders in the social web: An ego‐network analysis approach [slides]. INSNA Sunbelt Conference XXXI, St Pete’s Beach, 10 February 2011.
P. Tubaro, A. A. Casilli, L. Mounier, Autonomie et coopération: Les communautés pro-ana et les professions médicales [slides, in French]. CMH-PRO Seminar, ENS Campus Jourdan Paris, 28 January 2011.
P. Tubaro, Studying eating disorders in the social web: A network analysis approach [slides]. Social Network Analysis Seminar, Nuffield College – University of Oxford, 16 November 2010.
P. Tubaro, A.A. Casilli, Pro-ana and pro-mia social networks. The promises of qualitatively-informed agent-based modeling [slides]. 6th UK Social Networks Association Conference, University of Manchester, 16 April 2010.
Le Temps interviewed me and other project members for an article on “Internet, théâtre des troubles alimentaires”, 26 March 2013 (in French) [text, restricted].
Numérama quoted our work extensively in an article on “Contre l’anorexie, la censure du web est contre-productive”, 20 March 2013 [full text].
Nouvel Observateur -Pourquoi Docteur interviewed me for an article on “Anorexie: les réseaux sociaux tissent une solidarité”, 17 Dec. 2012 (in French) [full text].
The Economist cited our results in an article on “Anorexia online. Thin cases”, 1 December 2012 [full text].
Voice of Russia Radio invited me to discuss our results in a panel discussion on “How free is the Internet?”, 25 April 2012 [podcast].
(A more comprehensive list is available here.)
My own blog posts:
An older working paper is available:
A.A. Casilli, P. Tubaro (2008). The anorexic decision: An ego-centered network data approach [final draft]. Seminar reader of Communication Networks on the Web, QMSS-2, Amsterdam, 18-19 December.
Finally, we have produced a methodological article that we expect to be helpful here:
P. Tubaro, A.A. Casilli (2010). ‘‘An Ethnographic Seduction’’: how qualitative research and agent-based models can benefit each other [abstract][draft preprint]. Bulletin de Méthodologie Sociologique / Bulletin of Sociological Methodology, vol. 106, n. 1, pp. 59-74.