Experimenting with The Asthma Files: Digital Ethnography, Animating Collaboration Table of Contents .............................................................................................................................. 1 Participants ....................................................................................................................................... 2 Abstract + Statement of Significance for the Humanities and Digital Innovation ........................... 3 Narrative Overview ............................................................................................................................. 5 introduction project content and structure digital aspects and innovation project users, curation and evaluation Background .......................................................................................................................... 10 historial and anthropological studies of science and interdisciplinarity methods for cultural studies of the sciences developments in digitization and information processing History and Start-Up Results ............................................................................................... 12 ethnographic origins vetting TAF layering in the philosophy of science, language and visualization to Plone or not to Plone? teaching in TAF enrolling humanities researchers digital development and innovation RPI seed funding Environmental Scan ............................................................................................................. 17 digital oral history archives of the sciences developments in digital anthropology exemplars in the digital humanities computational tools and social analysis Work Plan ........................................................................................................................... 20 year 1 year 2 Staff and Rensselaer Context .............................................................................................. 23 Final Product and Dissemination ........................................................................................ 24 Sustainability Plan ........................................................................................................................... 25 Data Management Plan .................................................................................................................... 27 Appendices ...................................................................................................................................... 29 Screenshots Shared Questions Public Presentations of The Asthma Files Comparative Analysis of Plone and Drupal CMS Broad Impact Through Cultivation of New Scientific Literacies 1 List of Participants Kim Fortun (Rensselaer Polytechnic Institute) Peter Fox (Rensselaer Polytechnic Institute) Mike Fortun (Rensselaer Polytechnic Institute) Daniel Price (consultant, University of Houston) 2 Experimenting with The Asthma Files: Digital Ethnography, Animating Collaboration Abstract NEH funding is requested to support development of The Asthma Files, an experimental, digital ethnography project structured to support both collaboration among distributed, diversely focused researchers, and outreach to diverse audiences. While examining ways asthma is understood, cared for and governed in varied settings, it also examines how digital tools can be used to support new research practices, new ways of expressing ethnographic interpretation, and new ways of enrolling audiences in the process of ethnographic knowledge production. The Asthma Files is an experiment in ethnography, and in science, health and environmental communication. The project responds to dramatic increases in asthma incidence in the United States and globally in recent decades, and to wide acknowledgement that new forms of asthma knowledge are needed. The project aims to advance understanding of how knowledge about asthma and other complex conditions can be produced and configured, leveraging digital tools to enable new modes of collaboration among humanities researchers, and news ways of presenting and disseminating humanities research. The Asthma Files project has been designed to address substantive humanities research questions: 1) How do people, organizations, and societies deal with complex conditions (such as the global asthma epidemic)? 2) What knowledge practices are relied on and innovated in dealing with complex conditions? 3) How is knowledge about complex conditions translated into programs of care and governance? 4) What are the socio-cultural dimensions and dynamics of complex conditions? The Asthma Files have also been designed to address specific digital-methodology questions, applicable to different dimension/phases of the project: 1) How can information modeling and subsequent ontology development undergird and advance collaboration among humanities scholars? 2) How can data science, social network analysis and semantic web methodologies and technology help humanities scholars characterize distributed, possibly emergent expert communities (that are the subjects of humanities analysis)? 3) How can data science help humanities research characterize the knowledge practices of different kinds of experts, drawing out interdisciplinary practices and methodological innovation? 4) How can leading-edge digital techniques help humanities scholars produce analyses and modes of representation that help people understand and respond to complex conditions? NEH funding will support 1) refined curation of current content, alongside refinement of the workflow pathways supported by The Asthma Files 2) further customization of the Plone platform and integration of semantic web capabilities 3) ethnographic experimentation with computational tools developed to support natural science researchers’ work with large data sets 4) development of new modes of presentation/publication, for collaborators, peer reviewers and broader audiences 5) circulation of the RPI digital humanities group within the larger digital humanities community. The conceptualization of and plan for The Asthma Files has been presented to varied humanities audiences, and has been very enthusiastically received. The Asthma Files platform has strong potential to become a model digital platform for humanities research, customizable for varied humanities research groups. 3 Significance for the humanities The Asthma Files project and digital platform supports collaboration among ethnographers, enables new forms of ethnographic interpretation and expression, and activates interdisciplinary, cross-cultural engagement with complex conditions (such as the global asthma epidemic). The project advances effort within the humanities to develop peer-reviewed, open access scholarship Digital innovation The Asthma Files project will customize a Plone open source content management system, integrating semantic web capabilities, resulting in a flexible , theoretically informed digital platform that can be shared with other humanities research groups. 4 Experimenting with The Asthma Files: Digital Ethnography, Animating Collaboration Narrative Overview Asthma incidence has increased dramatically in recent decades, making asthma one of the most common chronic diseases in the world. Scientists, physicians, and public health officials cannot explain these increasing rates. Indeed, much about asthma remains ambiguous, puzzling, and resistant to scientific and clinical resolution. Asthma sufferers and caregivers also struggle daily to make sense of asthma, trying to understand the rhythms of incidence, triggers, and effective modes of care and prevention. Researchers can connect asthma rates to social stratification, to increased pollen counts and ozone levels, to declining air quality, to the increased “hygiene” of modern life -- but all such connections are partial and inconsistent. Researchers from many different disciplines and perspectives, in many different geographic and organizational contexts, have tried to figure asthma out, but it remains elusive. The Asthma Files (currently at http://xen007.tlc2.uh.edu:8081/asthmafiles) is an experimental, digital ethnography project that brings perspectives from these different groups together, cultivating synergism and comparative insight. The Asthma Files leverage digital tools to animate the comparative cultural perspective that the humanities, and particularly anthropology, are known to offer. In this way The Asthma Files are built around an early finding of the project: that asthma knowledge is fragmented, and there is little connection between people working on different factors in the complex matrix that produces asthma. Air pollution researchers describe themselves as unconnected to health researchers, for example. Many epidemiologists aren’t familiar with the air quality data sets that could be drawn into their studies. Geneticists have trouble relating to exposure scientists. Asthma parents describe themselves as insufficiently connected to asthma researchers. The Asthma Files respond to this disaggregation, aiming to animate new connections, conversations and collaborations. The Asthma Files is structured to support both collaboration among distributed, diversely focused researchers, and outreach to diverse audiences. The Asthma Files is both an experiment in ethnography, and in science, health and environmental communication. The project aims to advance understanding of how knowledge about asthma and other complex conditions can be produced and configured, leveraging digital