PHR User Privacy Concerns and Behaviours

Results of an empirical study on the privacy concerns, attitudes, and behaviour of personal health record (PHR) users are presented. The study addressed the following questions: (1) What are the factors influencing privacy concerns of PHR users? (2) To what extent do PHR users read privacy agreements and which factors are in play when they fail to read them. (3) Are the behaviour and attitudes of PHR users consistent with respect to reading privacy agreements and using privacy settings? We infer from the study results that the factors influencing privacy concerns of general online users (as reported in literature) also apply to PHR users. In spite of privacy concerns, 60% of the respondents in our study reported not reading privacy agreements. PHR users who were highly concerned about privacy did not report changing their default privacy settings (as offered in a typical social networking website) in a manner consistent with their stated attitudes towards privacy. Based on the issues identified in the study we conclude with a number of design recommendations for privacy-friendly PHR systems.