Value versus Use for Patients: Findings from an ICT supported Cystic Fibrosis Self-Management Project

This paper presents findings from the implementation of an online symptom monitoring diary that was part of a broader project aimed to support self-management of cystic fibrosis and the development of an online community of practice (CoP). The findings challenge conventional perspectives on how value is acquired by patients and their families from electronic tools designed to provide them with support. Additionally, the findings highlight complex relationships between user needs and subsequent tool use that challenge approaches to the measurement of value from ehealth projects.