'Never heard of it' - Understanding the public's lack of awareness of a new electronic patient record

Abstract

Background The introduction of electronic patient records that are accessible by multiple providers raises security issues and requires informed consent – or at the very least, an opportunity to opt out. Introduction of the Summary Care Record (SCR) (a centrally stored electronic summary of a patient’s medical record) in pilot sites in the UK was associated with low awareness, despite an intensive public information programme that included letters, posters, leaflets, and road shows.

Aim To understand why the public information programme had limited impact and to learn lessons for future programmes.

Methods Linguistic and communications analysis of components of the programme, contextualized within a wider mixed-method case study of the introduction of the SCR in pilot sites. Theoretical insights from linguistics and communication studies were applied.

Results The context of the SCR pilots and the linked information programme created inherent challenges which were partially but not fully overcome by the efforts of campaigners. Much effort was put into designing the content of a mail merge letter, but less attention was given to its novelty, linguistic style, and rhetorical appeal. Many recipients viewed this letter as junk mail or propaganda and discarded it unread. Other components of the information programme were characterized by low visibility, partly because only restricted areas were participating in the pilot. Relatively little use was made of interpersonal communication channels.

Conclusion Despite ethical and legal imperatives, informed consent for the introduction of shared electronic records may be difficult to achieve through public information campaigns. Success may be more likely if established principles of effective mass and interpersonal communication are applied.