Clinical self-tracking to improve knowing in practice: designing self-experiments for Type 2 Diabetes care

This thesis positions itself within the stream of research on self-tracking practices for the management of chronic illnesses. Self-care technologies, such as smartphones and many other mobile health devices, have led to the production of health data of patients outside institutional settings. This shift on the "personal" dimension of data has placed emphasis on self-knowledge practices supported by such technologies and on the concept of patient empowerment. Flanking a clinical trial conducted in north Italy aimed at quantifying the effectiveness and the acceptability of a self-tracking/remote-monitoring platform for type 1 and 2 diabetes patients, this work explores how a particular tool for self-tracking, the "personal experiment", fits in the process of knowledge of the patient with Type 2 Diabetes, exploring how the practice of learning to manage your own diabetes data is a complex activity that involves heterogeneous objects, actors and contexts. The leading research questions in this work were: (1) How do the knowing processes triggered by personal experiments involve patients’ with Type 2 Diabetes situated practices through their bodies, objects, technologies, contexts and relations? (2) How do personal experiments affect the empowerment and motivation of patients with Type 2 Diabetes to maintain a correct lifestyle? (3) How do personal experiments fit in the doctor-patient relationship, affecting existent educational practices and reconfiguring knowledge processes that involve patients with Type 2 Diabetes and their clinicians? By adopting a knowing in practice perspective and a subsequent qualitative research methodologies such as observation, semi-structured interviews, focus groups and co-design workshops, it was possible, firstly, to design a paper prototype of the digital personal experiment, “the notebook”; secondly, considering the notebook as a knowledge artefact allowed to explore the processes through which patients with Type 2 Diabetes learn to manage their disease, observing learning as a situated and emergent activity that involves first and foremost the patient's body, the objects and the power relationship with their clinicians.The main contributions of this thesis are on three different levels: first, analyzing self-knowledge of diabetes as a situated and emergent activity, it proposes to address the gap of studies on health literacy, which limit themselves to measuring what the patient learns as a result of the educational actions carried out by health professionals. Second, analyzing diabetes’ self-knowledge as a process that involves the practical knowledge and reconfigures power relationships between all actors involved, it aims to integrate studies on patient motivation and empowerment which conceive the doctor-patient reflections on patient’s data as a well-defined moment that follows a structured script. The ultimate goal of the thesis is to provide guidance to designers to develop digital personal experiments that are less standardized and more practice-based.