Members of the general public, including patients, have begun to play a newly important role in collecting data about health and disease. With the rise of the mobile web and the growth of smartphone use, citizens’ daily lives have become experiments “in the wild,” whose digital traces offer new opportunities and challenges to researchers seeking to gather information about human behavior and exposures outside of the controlled settings of lab-based studies. Yet, the novel achievements of user-generated health data rely heavily on participants’ willingness to share their data, even when doing so may not serve their own best interests. This talk will discuss how concepts of trust, privacy, sharing and security are changing in the era of digitally mediated user-generated content, with implications for civic culture, social data mining, and critical digital literacies.
Speaker: Kirsten Ostherr, PhD, MPH, Professor, Department of English, Rice University.