Datafication of Care: Security and Privacy Issues with Health Technology for People with Diabetes

Abstract

Through the conceptual framework of datafication, dataism and dataveillance, this study investigates beliefs and attitudes regarding datafication and the related privacy and security concerns among individuals with Type 1 diabetes. Qualitative research was conducted through interviews among fifty-two individuals with Type 1 diabetes in Poland and Italy. The findings reveal a dynamic interplay between self-discipline and empowerment. The majority of interviewees emphasized the benefits of technologies for gaining a better understanding of their health condition and for more effective disease management. However, a minority of interviewees perceived the negative effects of datafication, including dataveillance, which leads to hyper-control of the disease, and dataism, characterized by excessive reliance on and dependency on technology. Critical beliefs about technologies fuelled rejection attitudes, leading some interviewees to suspend or abandon their use. Lastly, reflexivity on privacy and security issues appears to be low, particularly among older individuals with lower levels of education and socioeconomic status. This results in a poor understanding and underestimation of the potential risks associated with security and privacy. The findings increase the understanding of the factors that can facilitate or hinder the adoption of technology among people with diabetes.