Healthcare and Big Data

"After companies marketed baby products to Mary F.E. Ebeling for years after a miscarriage, she wanted to know why. In this book, Ebeling exposes the so-called wizardry of big data marketing as a baffling amalgam of unreliable inferences and impenetrable bureaucracies. Her resilience and curiosity buoy a careful inquiry into health data brokers' and users' business models, aspirations, and effects on all of us. Combining the best of social science and self-reflection, the book is at once moving and well-theorized, deeply felt and precisely rendered. This is the work we need to push the privacy debate to a new level: the personal rendered political in lapidary prose and illuminating analysis." (Frank Pasquale, Professor of Law, University of Maryland, and Affiliate Fellow, Yale Information Society Project) "Mary Ebeling is a magnificent storyteller, and in this book she has performed a miracle, turning the potentially mind-numbing topic of "big data" into a gripping detective story, an intellectually and emotionally gut-wrenching excavation of digital surveillance in our everyday lives." (Stuart Ewen, Distinguished Professor, The Graduate Center, City University of New York (CUNY), USA and author of "Typecasting: On the Arts & Sciences of Human Inequality" (co-authored with Elizabeth Ewen, 2008) and "PR! A Social History of Spin" (1996)) "In this compelling expose, Mary Ebeling recounts a very personal narrative of her quest to uncover how her health information was exploited by data brokers and marketers. This book will be an eye-opener for readers as they realise the full extent of how intimate data about their bodies and lives have become valuable commodities in the global data economy." (Deborah Lupton, Centenary Research Professor, News & Media Research Centre, University of Canberra, Australia and author of the "Quantified Self" (2016) and "Digital Sociology" (2015))

This highly original book is an ethnographic noir of how Big Data profits from patient private health information. 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.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.