Designing an authorization system based on patient privacy preferences in Japan

High accessibility of Electronic Health Record systems can increase usability but creates simultaneously patients' anxieties about privacy issues. In order to reduce the privacy concerns, we focused on control and awareness, and designed an approach that can provide availability of patient's clinical data to doctors in two scenarios; (S1) direct control by the patient when they are conscious, (S2) control by a trusted representative when the patient is unconscious. In this paper, we show further analysis in a survey (n = 310, age range: 19-91) done to test the acceptability of our concept of a using a trusted representative and to further understand the concerns of Japanese citizens to improve our system design. These results in S1 suggest that patients concerned about control have a stronger inclination to also choose full awareness. We found also that patients tended to choose the same level of awareness for the representative as they did for themselves in S2. In addition, patients who chose awareness in S1 tended to choose the same for their representative in S2 and themselves after recovery from unconsciousness. We also discuss the significant differences found between the age-groups 20-39 and 60-79. We conclude that the system design of privacy aware EHR systems must be improved to consider patients who want to preserve their choice of control in the event they become unconscious but do not want to use a representative to maintain control.