Lessons about so-called “difficult” patients from the UK controversy over patient access to electronic health records

Abstract

Increasing numbers of patients have direct access to their electronic health records (EHRs). Proponents of direct access argue that it empowers patients by making them more informed and offering them more control over their health and care. According to some proponents of patients' access to EHRs, clinicians' concerns about potential negative implications are grounded in a form of paternalism that protects clinicians' authority. This paper draws upon narratives from patients in the United Kingdom (UK) who have access to their EHRs and suggests strategies for moving beyond these controversies between proponents and critics of the system. It additionally shows that the very organizational, procedural, and technological infrastructure that promises patients' increased access to records can also exacerbate some patients' “difficult” behaviors.