Editor’s Note: Ethnography can be used to inform important health and policy decisions. But there are few public case studies that illustrate the value of ethnography for this specific context. When we learned about The Asthma Files, a project where ethnographers were not only gathering data to better understand asthma but also openly sharing the data, we became very excited to feature their work.
The Asthma Files was first envisioned in 2006 by Kim and Mike Fortun, who wanted to address the contested space of asthma research. One of Kim’s graduate students, Erik Bigras, became involved in the project in 2009. Although Erik’s original dissertation topic was on game design, his research evolved to include the Asthma Files as one of his fieldsites.
In the first post of their three-part series, Erik and Kim tell us about how they conceptualized The Asthma Files, why asthma deserves research attention from ethnographers, and how research data is shared on an open content management system.
Erik Bigras is a PhD Candidate in the Department of Science and Technology Studies at RPI. As a graduate student, his work focuses on the production of technical legibility and subject effects in the arenas of air climate science and environmental governance.
The Asthma Files
An anthropological project to understand how different communities and societies respond to complex problems.
An interdisciplinary project to advance understanding of asthma and environmental public health.
An experiment in collaboration, exploring how diverse researchers and communities can work together to address complex problems.
An experimental digital platform seeking to animate new ethnographic practices and presentations, enhancing both the scholarly record and the public relevance of anthropological knowledge.
As ethnographers, we are familiar with origin stories, and The Asthma Files possesses its own. Mike Fortun and Kim Fortun first envisioned The Asthma Files while participating in an NIH-funded collaborative effort (led by health policy researcher Alexandra Shields, director of the Center for Genetics, Health Disparities and Vulnerable Populations at Harvard) to develop gene-environment interaction research responsive to health disparities, using asthma as a case study. A key event in this collaborative effort was a June 2006 workshop at Harvard brought together diverse researchers to consider possibilities and challenges. A key goal was to identify genetic study designs that incorporated sound environmental indicators.
At the June 2006 workshop, it was clear to us that geneticists, epidemiologists and environmental scientists had had limited prior contact, and worked with very different kinds of data and conceptual schemes. Further, there was a tendency to think that the group needed to come to consensus to work effectively together. As anthropologists, the Fortuns were interested in different ways of thinking about transdisciplinary collaboration, and in ways cultural and conceptual differences across the sciences could be put to advantage in efforts to deal with complex conditions such as asthma. They thus became interested in how explanatory pluralism in the sciences can be highlighted, deliberated and leveraged – through experimental ethnography. The Asthma Files is one result.
The Asthma Files are coordinated and curated by a group of us at Rensselaer Polytechnic Institute, Troy, New York, with links to an array of researchers at other sites. We analyze scientific publications, media coverage, government reports, and conduct interviews with people involved with asthma in different settings, and also host workshops and roundtable discussions that bring together people able to help articulate how asthma, and other complex problems, can be addressed within particular contexts.
Material generated through research for The Asthma Files is stored, collectively evaluated, and curated for public access in an online archive now under construction at Rensselaer. Each file in The Asthma Files archive is a brief, visually rich, densely hyperlinked digital presentation that conveys what a particular person or organization says or has done about asthma. Files are stored in interlinked drawers focused on “asthma knowledges,” and “asthmatic spaces.” The “asthma knowledges” drawer includes sets of files that examine different ways of understanding the character of asthma, its etiology, and how best to care for it. The “asthmatic spaces” drawer includes sets of files that examine asthma patterns, experiences and regimes of care in different countries, cities, neighborhoods and communities.
The project has been hard to pull and hold together – technically, organizationally, and conceptually. But we have sustained the sense that the experiment and effort is worth it – to advance both ethnography and our collective ability to deal with complex problems.
Why do we study asthma ethnographically?
First, public health agencies report dramatic increases in asthma incidence over the last few decades in the United States, in other highly developed countries, and – increasingly – in developing countries. In the United States in 2009, 8% of the population is reported to have asthma; asthma incidence in the United States mirrors social stratification; between 2001 and 2009 asthma rates among African-American children are reported to have risen by almost 50%. The World Health Organization estimates that 300 million people worldwide have asthma, and expects that number to grow. Incidence of Chronic Obstructive Respiratory Disease (COPD) is even higher. As ethnographers, the sheer magnitude and public significance of the asthma problem calls for ethnographic attention.
Second, it is widely acknowledged that established ways of thinking about asthma have inadequate explanatory power. An editorial in The Lancet in 2008, for example, issued “a plea to abandon asthma as a disease concept,” since “asthma is at best a syndrome with different risk factors, different prognoses, and different responses to treatment.” Journalist Tim Brooks also stresses the inadequacies of available ways to understand asthma in his account of his own efforts to live with the disease.
Brook’s Catching My Breath takes readers through his own experiences with asthma (some life threatening), through explanations from many different medical fields, and through many ways of caring for asthma – but still ends on a frustrated if not desperate note, showing how asthma is a knowledge problem as well as a body problem. Faced with such experiences, we became increasingly convinced that ethnographic knowledge was called for because of its potential to twist the kaleidoscope of these different knowledge forms, adding not only data and examples of a particular sort, but also coordinating analytics.
Related to the above, we increasingly became aware of the way that asthma has provoked and calls for many forms of knowledge – experimental knowledge, clinical knowledge, political knowledge, scientific knowledge of many kinds. Ethnographic study can draw diverse forms of knowledge out, and together, so that they synergize and give substance to collective deliberation about the character of the problem at hand, and possible modes of response.
Of interest to us as ethnographers are the ways in which different forms of knowledge can co-exist. Simultaneously, researchers like gastroenterologist Joel Weinstock stress that “you are more than your genetic self” and focus on how your gut ecosystem affects an array of immunological disorders, from hay fever and asthma to Crohns and multiple sclerosis. Other researchers, like pediatrics professor Bruce Lanphear, work to quantify and prevent how exposure to lead, pesticides and other environmental contaminants affect incidence of asthma, ADHD, and other disabilities. Alongside this scientific work – often without points of connection – school nurses and coaches, parents and primary care physicians work to manage the asthma of the particular children they care for, generating insight of a very different order than that produced through scientific research. We aim to bring these different forms of knowledge into productive juxtaposition.
Third, asthma occurs in diverse landscapes, with different built and political environments, exacerbated by locale-specific triggers, all conditions that are familiar to us ethnographers. In many regions of the developing world, for example, smoke from indoor cooking dramatically affects air quality and respiratory health, particularly of women. In Los Angeles and Houston, vehicle pollution mixes with pollution from oil refineries and an array of medium-size industrial shops that are often below the regulatory radar. Large Mexican-American populations in both cities are particularly burdened. Yet asthma governance and care in Los Angeles and Houston are very different. Though our ethnographic study of asthma in diverse settings, we can draw out both shared conditions and dynamics, and the specificities of place – advancing understanding of environmental health governance by advancing the comparative perspective anthropology has long promised to provide.
Finally, asthma poses massive data coordination challenges. The International Study of Asthma and Allergies in Childhood (ISAAC) is described as “the largest worldwide collaborative research project ever undertaken.” Early efforts to estimate global asthma incidence aggregated data from different surveys, using different asthma definitions, different sampling methodologies, and different age groups. Later efforts – carried out through The World Health Survey (WHS), developed and implemented by the World Health Organization in 2002-2003 – involved coordination of data, definitions, and diagnoses from 70 countries. Managing and even suppressing data heterogeneity was critical to its successes. But asthma also calls for data integration efforts that creatively coordinate, rather than suppress or elide, data heterogeneity.
Asthma researcher Rosalind Wright, for example, developed a study designed to understand why asthma burdens in low-income, minority communities in the United States are so strikingly high. The study design integrated such diverse variables as household income, birthweight, smoking, parental education level, race/ethnicity, and various measures of psychosocial stress. This data coordination challenge posed by asthma is ethnographically interesting, providing a point of entry for understanding how data infrastructures and data flows work, and partly define the contemporary historical moment. The data coordination challenge posed by asthma is also suggestive of the kind of challenges we, as ethnographers, will face as we work to use digital tools to develop our own ways of a sharing data and collaborating to address complex problems.
Ethnography and online spaces are not strangers to one another. For example, anthropologists such as Gabriella Coleman, Michael Wesch, Tom Boellstorff, and Jason Jackson have successfully used online spaces for archival purposes and to understand the online creation of meanings and knowledges.
Our aims, however, are slightly different. We seek to re-think and re-organize the everyday, mundane work of anthropology so that, collaboratively, we are better able to address complex conditions – such as the global asthma epidemic. We want to re-program how we produce and share data, write, analyze, edit, review and publish – to produce new kinds of anthropological insight, with relevance to diverse user communities.
To accomplish this task, we’ve settled on Plone, an open source content management system, to create its online work space. One aspect of Plone that differentiates it from other content management systems – such as the popular Drupal or WordPress – is that it is more than a content delivery platform; it can act as an online desktop through which everyday work can be performed. For example, Plone allows us to define specific work flows, give a particular publishing status to a piece of writing, finely define the tasks able to be performed by various user categories, as well as act as a file storage and manipulation platform. Further, Plone is well-known for its security features, which enables us to easily and securely store and share (with delimited users) IRB-protected material.
Choosing an appropriate platform was only the first step. Because we are expressly concerned with complex conditions, how to organize work spaces, flows and results were far from straightforward. We’ve had to consider, for example, how different users should be defined and what duties would be assigned to them. We also had to figure out the steps toward making an asthma file, and how to organize supporting material (images, video, etc).
We also had to set up the relationship between users, tools, and various other media and the relationship between all the different parts of the online space, as well as the relationship between these spaces and other spaces. Clearly defining these aspects allows us to better understand how knowledge and information circulates through the workspace, which then enables us to begin questioning the ways in which ethnography can be used differently to understand complex conditions.
With Plone enabling the geographically widespread The Asthma Files research team to more easily collaborate during their everyday, mundane work, it was now possible for us to create certain tools that would facilitate participation in the project by researchers possessing a wide variety of professional backgrounds.
One such tool is a set of shared questions that can be used by researchers to orient their own analysis. We also share a group Zotero bibliography that can be easily accessed online by anyone interesting in learning about or being involved in the project. Another tool is the analytical timelines that allow various aspects about asthma to be juxtaposed. Through these tools, we aim to allow researchers from a variety of backgrounds to visualize and respond to complex problems in new ways.
Working on The Asthma Files has been a hugely rewarding experience. So far, we’ve had the opportunity to collaborate with a wide variety of contributors, be they epidemiologists, asthma specialists, industry people, as well as ethnographers working in a multitude of geographic settings.
We continue our work to bring our online archive up to date, and are currently working on transferring content over from our development site to the public one – and interesting ethnographic experience in itself that we will discuss further in the next post, where we will go into more detail as to why we chose Plone over other online platforms, and how this choice impacted our everyday ethnographic practices.