This study identifies and explores evolving concepts of trust and privacy in the context of user-generated health data. We define “user-generated health data” as data captured through devices or software and used outside of traditional clinical settings for tracking personal health data. The investigators conducted qualitative research through semistructured interviews with researchers, health technology start-up companies, and members of the general public to inquire why and how they interact with and understand the value of user-generated health data. We found significant (...) results concerning new attitudes toward trust, privacy, and sharing of health data outside of clinical settings that conflict with regulations governing health data within clinical settings. Members of the general public expressed little concern about sharing health data with the companies that sold the devices or apps they used, and indicated that they rarely read the “terms and conditions” detailing how their data may be exploited by the company or third-party affiliates before consenting to them. In contrast, interviews with researchers revealed significant resistance among potential research participants to sharing their user-generated health data for purposes of scientific study. The widespread rhetoric of personalization and social sharing in “user-generated culture” appears to facilitate an understanding of user-generated health data that deemphasizes the risk of exploitation in favor of loosely defined benefits to individual and social well-being. We recommend clarification and greater transparency of regulations governing data sharing related to health. (shrink)

Digital data is an increasing and continual presence across the sites, activities and relationships of everyday life. In this article we explore what data presence means for the ways that the everyday is organised, sensed, and anticipated. While digital data studies have demonstrated how data is deeply entangled with the way in which everyday life is lived out and valued, at the same time our relationships with data are riddled with anxieties or small niggles or tricky trade-offs and their use (...) is often chaotic and muddled, part of the inevitable uncertainty about what will happen next. If the presence of data is part of the environments we inhabit, this raises the question of how and why data is valuable to us and what forms of hope and trust enable this value to further develop. (shrink)