Ulrike Rauer

Key to successful adoption of Internet-based health records is how much a patient places trust that data will be properly secured from inadvertent leakage.

In an attempt to reduce costs and improve quality, digital health records are permeating health systems all over the world. Internet-based access to them creates new opportunities for access and sharing—while at the same time causing nightmares to many patients: medical data floating around freely within the clouds, unprotected from strangers, being abused to target and discriminate people without their knowledge? Individuals often have little knowledge about the actual risks, and single instances of breaches are exaggerated in the media. Key to successful adoption of Internet-based health records is, however, how much a patient places trust in the technology: trust that data will be properly secured from inadvertent leakage, and trust that it will not be accessed by unauthorised strangers. Situated in this context, my own research has taken a closer look at the structural and institutional factors influencing patient trust in Internet-based health records. Utilising a survey and interviews, the research has looked specifically at Germany—a very suitable environment for this question given its wide range of actors in the health system, and often being referred to as a “hard-line privacy country”. Germany has struggled for years with the introduction of smart cards linked to centralised Electronic Health Records, not only changing its design features over several iterations, but also battling negative press coverage about data security. The first element to this question of patient trust is the “who”: that is, does it make a difference whether the health record is maintained by either a medical or a non-medical entity, and whether the entity is public or private? I found that patients clearly expressed a higher trust in medical operators, evidence of a certain “halo effect” surrounding medical professionals and organisations driven by patient faith in their good intentions. This overrode the concern that medical operators might be less adept at securing the data than (for example) most non-medical IT firms. The distinction between public and private operators is…