This highly original book is an ethnographic noir of how Big Data profits from patient private health information. The book follows personal health data as it is collected from inside healthcare and beyond to create patient consumer profiles that are sold to marketers. Primarily told through a first-person noir narrative, Ebeling as a sociologist-hard-boiled-detective, investigates Big Data and the trade in private health information by examining the information networks that patient data traverses. The noir narrative reveals the processes that the data broker industry uses to create data commodities―data phantoms–or the marketing profiles of patients that are bought by advertisers to directly market to consumers. Healthcare and Big Data considers the implications these “data phantoms” have for patient privacy as well as the very real harm that they can cause.
Mary Ebeling is associate professor of sociology and director of Women’s and Gender Studies at Drexel University. Mary is an ethnographic sociologist and researches the intersections of marketing, health, biomedical science and digital life. Her new book, Healthcare and Big Data: Digital Specters and Phantom Objects (2016, Palgrave Macmillan) is focused on data brokers, data mining, marketing surveillance, private health data, and algorithmic identities.
Her work has received support from the National Science Foundation, the Economic and Social Research Council (UK) and the European Union (5th Framework Programme). She has been awarded a Regional Faculty Fellowship at the Wolf Humanities Center at the University of Pennsylvania for the 2017-18 academic year.
She collaborates with scientists, artists and urban farmers to reimagine presents and futures, particularly Paolo Milani, Rachel Ellis Neyra, RAIR, the Mill Creek Farm in West Philadelphia and alternative art spaces and collectives, such as Beta-Local in San Juan, Puerto Rico, Konsthall C in Stockholm, Sweden, and several artists’ collectives in Philadelphia including Grizzly Grizzly and Vox Populi.
More information about Mary can be found at: maryebeling.net