Paper short abstract:

Self-monitoring for health and disease leads to increased intertwining of the clinic and consumer market, creating governance issues and privacy concerns in exchange of health data.

Paper long abstract:

Quantified health includes self-monitoring for chronic disease management, tracking and tracing for fitness and wellbeing, and use of sensor technology and 'big data' in medical research. Measuring and monitoring everyday life assumes increased control and self-management over health and disease. But it also creates novel markets and alternative business models based on health data. Drawing on case studies from clinical practice and medical research, we investigate how consumer market values (such as profiling and big data marketing techniques) interfere with the tightly regulated relation between patient and physician. With the 'appification' and 'lifestylisation' of medicine, new stakeholders enter the health domain, such as global technology developers and medical device companies. These constituencies do not necessarily have a care relationship with the person collecting data for personal use, or an interest in their individual wellbeing.

Coming from a technology assessment perspective, our empirical research covers case studies from chronic disease management, medical science and consumer health. In addition we discuss experiences with an art installation for continuous health monitoring in relation to profiling. Addressing politicians and broader publics, we pose the question who benefits from self-monitoring of health, and which governance issues should be addressed in order to safeguard the increased circulation of vulnerable health data across domains beyond the clinic.