Abstract
BACKGROUND: Researchers are concerned about the possibility of restricted access to data as a result of specific consent requirements in privacy legislation, potentially resulting in smaller samples and a lack of representativeness which could bias results. In addition, there is uncertainty about what influences individuals to give consent for the use of their personal health information. OBJECTIVE: To measure joint replacement recipients' health information privacy views and to assess potential predictors of these views. DESIGN: Cross-sectional survey. SETTING AND PARTICIPANTS: Potential joint replacement recipients from two teaching hospitals in London, Ontario, Canada. MAIN VARIABLES: Age, gender, education, employment status, anticipated joint replacement, and expectations for surgery. MAIN OUTCOME MEASURES: Privacy concerns as measured by the Concern Scale. RESULTS: The response rate was 182/253 or 72%. The mean Concern score was 143.9/235.0 for the total sample (range = 82-216). Women had higher levels of privacy concerns than men on slightly over half of the individual questionnaire items. In women, surgical joint, age and employment explained 15% of the variance in concerns about personal health information privacy (P = 0.001). The model explained 6% of the variance in concerns in men (P = 0.138) and was not statistically significant. DISCUSSION AND CONCLUSION: This study indicates that demographic characteristics and health-care experiences play a role in the variability of health information privacy concerns. A greater understanding of patients' privacy views about health information could lead to a greater harmonization among privacy rules, research and data access, and the preferences of health-care consumers.