It’s been nearly four years since The Asthma Files (TAF) really took off (as a collaborative ethnographic project housed on an object-oriented platform). In that time our work has included system design and development, data collection, and lots of project coordination. All of this continues today; we’ve learned that the work of designing and building a digital archive is ongoing. By “we” I mean our “Installation Crew”, a collective of social scientists who have met almost every week for years. We’ve also had scores of students, graduate and undergraduates at a number of institutions, use TAF in their courses, through independent studies, and as a space to think through dissertations. In a highly distributed, long-term, ethnographic project like TAF, we’ve derived a number of modest findings from particular sites and studies; the trick is to make sense of the patterned mosaic emerging over time, which is challenging since the very tools we want to use as a window into our work — data visualization apps leveraging semantic tools, for example — are still being developed.
Given TAF’s structure — thematic filing cabinets where data and projects are organized — we have many small findings, related to specific projects. For example, in our most expansive project “Asthmatic Spaces”, comparisons of data produced by state agencies (health and environmental), have made various layers of knowledge gaps visible, spaces where certain types of data, in certain places, is not available (Frickel, 2009). Knowledge gaps can be produced by an array of factors, both within organizations and because of limited support for cross agency collaboration. Another focus of “Asthmatic Spaces” (which aims to compare the asthma epidemic in a half dozen cities in the U.S. and beyond) is to examine how asthma and air quality data are synced up (or not) and made usable across public, private, and nonprofit organizations.
In another project area, “Asthma Knowledges”, we’ve gained a better understanding of how researchers conceptualize asthma as a complex condition, and how this conceptualization has shifted over the last decade, based on emerging epigenetic research. In “Asthma Care” we’ve learned that many excellent asthma education programs have been developed and studied, yet only a fraction of these programs have been successfully implemented, such as in school settings. Our recent focus has been to figure out what factors are at play when programs are successful.
Below I offer three overarching observations, taken from what our “breakout teams” have learned working on various projects over the last few years:
*In the world of asthma research, data production is uneven in myriad ways. This is the case at multiple levels — seen in public health surveillance and our ability to track asthma nationally, as well as at the state and county level; as seen through big data, generated by epigenetic research; in the scale of air quality monitoring, which is conducted at the level of cities and zip codes rather than at neighborhood or street level. Uneven and fragmented data production is to be expected; as ethnographers, we’re interested in what this unevenness and fragmentation tells us about local infrastructure, environmental policy, and the state of health research. Statistics on asthma prevalence, hospitalizations, and medical visits are easy to come by in New York State and California, for example; experts on these data sets are readily found. In Texas and Tennessee, on the other hand, this kind of information is harder to come by; more work is involved in piecing together data narratives and finding people who can speak to the state of asthma locally. Given that most of what we know about asthma comes from studies conducted in major cities, where large, university-anchored medical systems help organize health infrastructure, we wonder what isn’t being learned about asthma and air quality in smaller cities, rural areas, and the suburbs; what does environmental health (and asthma specifically) look like beyond urban ecologies and communities? We find this particularly interesting given the centrality that place has for asthma as a disease condition and epidemic.
*Asthma research is incredibly diffuse and diverse. Part of the idea for The Asthma Files came from Kim Fortun and Mike Fortun’s work on a previous project where they perceived communication gaps between scientists who might otherwise collaborate (on asthma research). Thus, one of our project goals has been to document and characterize contemporary asthma studies, tracing connections made across research centers and disciplines. In the case of a complex and varied disease like asthma — a condition that looks slightly different from one person to the next and is likely produced by a wide composite of factors — the field of research is exponential, with studies that range from pharmaceutical effects and genetic shifts, to demographic groups, comorbidities, and environmental factors like air pollution, pesticides, and allergens. Admittedly, we’ve been slow to map out different research trajectories and clusters while we work to develop better visualization tools in PECE (see Erik Bigras’s February post on TAF’s platform).
What has been clear in our research, however, is that EPA and/or NIEHS-funded centers undertaking transdisciplinary environmental health research seem to advance collaboration and translation better than smaller scale studies. This suggests that government support is greatly needed in efforts to advance understanding of environmental health problems. Transdisciplinary research centers have the capacity to conduct studies with more participants, over longer periods of time, with more data points. Columbia University’s Center for Children’s Environmental Health provides a great example. Engaging scientists from a range of fields, CCCEH’s birth cohort study has tracked more than 700 mother-child pairs from two New York neighborhoods, collecting data on environmental exposures, child health and development. The Center’s most recent findings suggest that air pollution primes children for a cockroach allergy, which is a determinant of childhood asthma. CCCEH’s work has made substantial contributions to understandings of the complexity of environmental health, as seen in the above findings. Of course, these transdisciplinary centers, which require huge grants, are just one node in the larger field of asthma research. What we know from reviewing this larger field is that 1) most of what we know about asthma is based on studies conducted in major cities, 2) that studies on pharmaceuticals greatly outnumber studies on respiratory therapy; that studies on children outnumber studies on adults; that studies on women outnumber studies on men; and that many of the studies focused on how asthma is shaped by race and ethnicity focus on socioeconomic factors and structural violence; finally, 3) that over the last fifty years, advancements in inhaler technology mechanics and design has been limited in key ways, especially when compared to a broader field of medical devices.
*Given the contextual dimensions of environmental health, responses to asthma are shaped by local factors. What’s been most interesting in our collaborative work is to see what comes from comparing projects, programs, and infrastructure across different sites. What communities and organizations enact what kinds of programs to address the asthma epidemic? What resources and structures are needed to make environmental health work happen? Environmental health research of the scale conducted by CCCEH depends on a number of factors and resources — an available study population, institutional resources, an air monitoring network, and medical infrastructure, not to mention an award winning grassroots organization, WE-ACT for Environmental Justice. Infrastructure can be just as uneven and fragmented as the data collected, and the two are often linked: Despite countless studies that associate air pollution and asthma, less than half of all U.S. counties have monitors to track criteria pollutants. And although asthma education programs have been designed and studied for more than two decades now, implementation is uneven, even in the case of the American Lung Association’s long-standing Open Airways for Schools. This is not to say that asthma information and care isn’t standardized; many improvements have been made to standardize diagnosis and treatment in the last decade. Rather, it’s often the form that care takes that varies from place to place. One example of what has been a successful program is the Asthma and Allergy Foundation of America’s Breathmobile program. Piloted in California more than a decade ago, Breathmobiles serve hundreds of California schools each year and more than 5,000 kids. Not only are eleven Breathmobiles in operation in California, but the program has also been replicated in Phoenix, Baltimore, and Mobile, AL. Part of the program’s success in California can be attributed to the work of the state’s AAFA chapter, and partnerships with health organizations, like the University of Southern California and various medical centers. Importantly, California has historically been a leader in responses to environmental health problem.
As we continue our research, in various fieldsites, grow our archive, and implement new data visualization tools, we hope to expand on these findings and further synthesize from our collective work. And beyond what we’re learning about the asthma epidemic and environmental health in the U.S., we’ve also taken many lessons from our collaborative work, and the platform that organizes us.