Joint replacement recipients' views about health information privacy.

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.