The Invisibility of Disadvantage: Why Do We Not Notice?

Abstract

Personal health records (PHRs) offer tantalising benefits for patients and healthcare providers, including improvements in patient-provider communication, patient empowerment, and access to data and information. A suspicion that disadvantaged patients are less likely to use or benefit from PHRs stimulated a research agenda that included: (a) a literature review; and (b) empirical analysis of eight years' hospital admission and discharge data linked to measures of patient social disadvantage. The results demonstrated an association between disadvantage, increased use of public hospital services and barriers to PHR use. These findings may appear self-evident, but dramatically highlight how disadvantaged patients continue to be overlooked in many e-health design processes, and are rarely a focus of user centred design. The paper concludes by briefly considering the implications of this invisibility.