How «personal» is the «personal Health Record»? Technology and patient empowerment in the care of Diabetes

This paper explores the role and meaning of medical information against the backdrop of new digital tools that allow for new forms of data management and sharing within the healthcare management network. The research investigates data management practices by parents of children with Type 1 diabetes as they are enabled by a Personal Health Record to become stewards of their own medical information. The underlying assumption of this and similar technologies is that they would support patient-provided collaboration and reduce the information gap between clinical encounters. Drawing on a qualitative research design, the authors analyze data management and sharing practices among patients and healthcare providers before and after the introduction of a digital logbook for diabetes management in the pediatric department of a hospital in northern Italy. The paper reveals how patients interpreted their new roles in terms of restricting access to their information, rather than facilitating its dissemination, to preserve their own competence and independent management of the information regarding their ≪PersonalGt; diseases.