Complexity in an uncertain and cosmopolitan world. Rethinking personal health technology in diabetes with the tag-it-yourself

This paper reports on a project aimed at improving our understanding of self-care practices and technology, and at designing solutions to support everyday self-management in chronic disease. Diabetes type 1 self-care practices are here discussed as an illustration of complex issues increasingly seen in our society. Drawing on some literature from Science and Technology Studies and from empirical evidence from an ethnographic study of self-care practice in diabetes, this paper suggests to rethink some of the assumptions of the traditional medical model and shows how these seem to be taken for granted in the design of patient-care systems. In particular, it argues for an approach that acknowledges the uncertainties of chronic self-care and so the need to avoid normative approaches that give voices to the clinical and scientific aspects of the disease but tend to silence the lay perspective of the patient. The idea of cosmopolitanism is introduced to suggest the need to support - by design - different perspectives and expertise in self-care practices. This idea invites us to connect the advantages of different ways of knowing a complex matter by seeking complementarity, integration, dialogues and negotiations among the involved stakeholders. In line with this proposed approach, the paper introduces the Tag-it-Yourself journaling system enabling the personalization of self-monitoring practices in diabetes, and an improved visibility of the patient's perspective, concerns and knowledge.