Posts Tagged ‘ Eating disorders ’

Data, health online communities and the collaborative economy: my tour of Québec

This November gave me the opportunity to give talks and participate in scientific events throughout Québec.

comsanteI started in Montréal, with a seminar at ComSanté, the health communication research centre of Université du Québec à Montréal (UQAM), where I presented my recently published book on websites on eating disorders. While most media attention focused on controversial “pro-anorexia” contents, presented as an undesirable effect of online free speech, I made the point that this part of the webosphere is rather to be seen as a symptom of the effects of current transformations of healthcare systems under austerity policies. Cuts in public health spending encourage patients to be active, informed and equipped, but the resulting social pressure creates paradoxical behaviors and risk-taking.

Also in Montréal, I was invited to a discussion with economic journalist Diane Bérard on the growth and crisis of theecocoll collaborative economy. About 50 people attended the event, co-organised by co-working space L’Esplanade, OuiShare Montréal and the journal Les Affaires. Diane summarized the essentials of the event in a blog post just the day after, and noted six main points:

  • The Uber case dominates discussions and divides the audience – though the collaborative economy is not (just) Uber.
  • The discussion gets easily polarized – a result of the tension between commercial and non-commercial goals of the collaborative economy.
  • We still know little of the business models of these platforms and the external factors that facilitate or hinder their success.
  • Sharing is in fact a niche market – now probably declining after the first enthusiasms.
  • The key issue for the future is work – its transformations, and how it is re-organizing itself.
  • Collaborative principles advance even outside the world of digital platforms, and sometimes permeate more traditional sectors. The near future of collaboration are sharing cities.

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The “pro-ana” phenomenon: Eating disorders and social networks

proanaA new book is just out, co-authored by myself and Antonio A. Casilli: a synthesis of our 5-odd years research on the self-styled internet communities, blogs and forums of persons with eating disorders. For years, lively controversies have surrounded these websites, where users express their distress without filters and go as far as to describe their crises, their vomiting and their desire for an impossibly thin body – thereby earning from the media a reputation for “promoting anorexia” (shortened as “pro-ana”). In France, an attempt to outlaw these online spaces last year was unsuccessful, not least because of our active resistance to it.

The book tells the story of our discovery of these communities, their members, their daily lives and their social networks. Ours was the first study to go beyond just contents, and discover the social environments in which they are embedded. We explored the social networks (not only online relationships, but day-to-day interactions at school or work, in the family, and among friends) of internet users with eating disorders, and related them to their health. The results defy received wisdom – and explain why banning these websites is not the right solution.

Internet deviance or public health budget cuts?

It turns out that “pro-ana” is less a form of internet deviance than a sign of more general problems with health systems. Joining these online communities is a way to address, albeit partially and imperfectly, the perceived shortcomings of healthcare services. Internet presence is all the more remarkable for those who live in “medical deserts” with more than an hour drive to the nearest surgery or hospital. At the time of the survey in France, a number of areas lacked specialist services for eating disorder sufferers.

 

Availability of specialized services and support for eating disorder sufferers in France in 2012. Source: AFDAS-TCA & FNA-TCA.

Availability of specialized services and support for eating disorder sufferers in France in 2014. Source: AFDAS-TCA & FNA-TCA.

These people do not always aim to refute medical norms. Rather, they seek support for everyday life, after and beyond hospitalisation. These websites offer them an additional space for socialisation, where they form bonds of solidarity and mutual aid. Ultimately, the paradoxical behaviours observed online are the result of underfunded health systems and cuts in public budgets, that impose pressure on patients. The new model of the ‘active patient’, informed and proactive, may have unexpected consequences.

 

A niche phenomenon with wider repercussions

In this sense, “pro-ana” websites are not just a niche phenomenon, but a prism through which we can read broader societal issues: our present obsession with body image, our changing relationships with medical authorities, the crisis and deficit of our publich health systems, as well as the growing restrictions to our freedom of expression online.

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“Pro” ana? Sociability and support in eating disorder online communities

This article was first published on Discover Society, November 2014.

Last June, a group of Italian MPs proposed jail terms and fines for authors of so-called “pro-ana” (anorexia) and “pro-mia” (bulimia) websites. These are self-styled online communities on eating disorders which are viewed as promoting extreme dieting and unhealthy eating practices. France and the United Kingdom preceded Italy’s attempt to pass restrictive legislation as far back as 2008-9, and many internet service providers also endeavoured to ban these contents.

But the potential spread of health-hazardous behaviours is probably only one side of the coin, and these websites might also channel health-enhancing assistance, advice, and support (Yeshua-Katz & Martins 2013). In fact a closer look reveals that website users carefully manage their online socialisation to address their health challenges. Online social spaces enable discussion around the illness and constitute a complement, albeit an admittedly imperfect one, to formal healthcare services. There is no rejection of standard health norms in the name of some extreme ideal of thinness but rather a need – or perhaps, a cry – for extra support.

A social science approach brings out these results. The effect of web interactions on health does not only depend on website contents, but also on how people actually use them, share them, and access resources through them. The social, rather than just clinical dimension of eating disorders, recognized long before the advent of the web (Bell 1985, Orbach 1978), becomes ever more relevant in the current context and calls for a more comprehensive view of the “ana” and “mia” social universe.

SupportANAMIA(Credit: Roberto Clemente)

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Against the criminalization of “pro-ana” websites

ItalianMPs

A bipartisan group of Italian MPs has recently put forward a bill proposing jail time and hefty fines for people encouraging eating disorders on the web. A primary target of the new measures are the so-called “pro-ana” and “pro-mia” websites.

The very premises of the proposed law are flawed, and it is based on very thin evidence. With a multidisciplinary team of researchers from French and British Universities, I have studied these websites since 2010 (ANAMIA project). Our results suggest that the the bill, if approved, would be ineffective (websites migrate) and harmful (making these communities more isolate and difficult to reach by health practitioners).

This is not only an Italian affair, but the sign of a more general concern. In the past, UK and France have unsuccesfully endeavoured to ban or restrict these sites. At stake is our societies’ approach to mental illness and whether criminalizing it is the right response.

Antonio A. Casilli and myself have written a story on this topic on Medium, entitled An open letter to the Italian Parliament, against the criminalization of “pro-ana” websites. A dangerous new law could turn into a public health disaster. Our point is that such laws do not create a suitable environment for betterment and well-being of individuals living with eating disorders. The results of recent studies allow better understanding of these online communities.

For more information, please see here.

The transformative powers and the politics of data visualisation: a case with personal network data

Data visualisation is still relatively uncommon in the social sciences, and is not normally expected to be part of the standard work of a scholar (contrary, some would say, to what happens in the sciences, where visualisation is sometimes necessary to figure out the properties of objects whose existence is proven, but which cannot be seen). Yet data visualisation has an extraordinary history of accomplishments even in the social realm, as cleverly documented in a forthcoming article by James Moody and Kieran Healy; and classics such as Pierre Bourdieu valued it and attempted to use it in at least some of their work, as Baptiste Coulmont interestingly reported in a blog post.

Yet the digital age offers new opportunities for data visualisation, that are largely unexploited in the social sciences. It becomes not only a tool for the researcher — to explore data prior to conducting statistical analyses, or to present results once the work is done —  but also for the general user, the study subject, the beneficiary of any policy under discussion, and the general public. As theorists in the arts and digital humanities (but not much in the social sciences, I am afraid) have noticed, the Internet and all digital infrastructures are becoming today interfaces with databases, and users of all types are immersed in a world of data in a way that was unknown before. This means that data visualisations can have new and more transformative uses, empowering study subjects and people in general, by offering them intuitive and aesthetically appealing tools to better navigate this digital world. But it also involves new dangers, as to who sets the agenda and what aspects or characteristics of the data are being stressed; data are not just objective, ‘raw’ materials but mediated ones, and the choice of how to make them perceptible by the senses is not neutral.

At the annual conference of the British Sociological Association today in Leeds, in the Methodological Innovations Stream, I am presenting data visualisation work I have done with colleagues Antonio A. Casilli, Lise Mounier and Fred Pailler, as well as data visuliaser Quentin Bréant, as part of the research project ANAMIA. We developed three tools — one for data collection, one for data exploration and preliminary analysis, one as a basis for heuristics and presentation of results. The first was for our study subjects, the second for us researchers and our colleagues, the third for us and the larger public. My slides are available:

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Small data and big models: Sunbelt 2014

Uh, it’s been a while… I should have written more regularly! All the more so as many things have happened this month, not least the publication of our book on the End-of-Privacy hypothesis. Well, I promise, I’ll catch up!

Meanwhile, a short update from St Pete Beach, FL, where the XXXIV Sunbelt conference is just about to end. This is the annual conference of the International Network for Social Network Analysis and in the last few years, I noticed some sort of tension between the (let’s call it like that — no offense!) old-school of people using data from classical sources such as surveys and fieldwork, and big data people, usually from computer science departments and very disconnected from the core of top social network analysts, mostly from the social sciences. This year, though, this tension was much less apparent, or at least I did not find it so overwhelming. There weren’t many sessions on big data this time, but a lot of progress with the old school — which in fact is renewing its range of methods and tools very fast. No more tiny descriptives of small datasets as was the case in the early days of social network analysis, but ever more powerful statistical tools allowing statistical inference (very difficult with network data — I’ll go back to that in some future post), hypothesis testing, very advanced forms of regression and survival analysis. In this sense, a highly interesting conference indeed.  We can now do theory-building and modeling of networks at a level never experienced before, and we don’t even need big data to do so.

The keynote speech by Jeff Johnson, interestingly, was focused on the contrast between big and small data. Johnson has strong ethnographic experience with small data, including in very exotic settings such as scientific research labs at the South Pole and fisheries in Alaska. He combined social network analysis techniques, sometimes using highly sophisticated mathematical tools, with fieldwork observation to gain insight into, among other things, the emergence of informal roles in communities. His key question here was, can we bring ethnographic knowing to big data? And how can we do so?

My own presentation (apart from a one-day workshop I offered on the first day, where I taught the basis of social network analysis) took place this afternoon. I realize, and I am pleased to report, that it was in line with the small-data-but-sophisticated-modeling mood of the conference. It is a work derived from our research project Anamia, using data from an online survey of persons with eating disorders to understand how the body image disturbances that affect them are related to the structure of their social networks. The data were small, because they were collected as part of a questionnaire; but the survey technique used was advanced, and the modeling strategy is quite complex. For those who are interested in the results, our slides are here:

Small Data to study the Web: The ANAMIA project

We have just published the results of our research project ANAMIA, studying the personal networks and online interactions of persons with eating disorders (“ana” and “mia” in web jargon). The report has just come out:

Documents

Report: Young internet users and eating disorder websites: beyond the notion of “pro-ana” (pdf, 92 pp, in French)

Infographic: results and recommendations of the ANAMIA project (pdf, in French)

Summary (in English!)

The ana-mia webosphere had remained opaque for long, with little data available for a science-based understanding of it. As a result, misconceptions proliferated and policy-makers hesitated — threatening censorship but without devising solutions to reach out and support a population in distress. Our study has been the first to overcome these limitations and reveal the social environment, actual eating practices and digital usages of persons with eating disorders in the English and French web.

Fig1

Visualization of the personal networks of four individuals with, respectively, EDNOS (Eating Disorders Not Otherwise Specified, top panel, left), anorexia nervosa (top, right), bulimia nervosa (bottom, left), binge eating (bottom right). Hollow circles represent their face-to-face acquaintances, filled circles their online ones. Colours indicate relational proximity to the subject (green: intimate, blue: very close, yellow: close, red: somewhat close). Source: ANAMIA project report.

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