Joint replacement recipients’ post-surgery views about health information privacy and registry participation

Patient registries have been demonstrated to improve health care, and represent an important source of data to health researchers and policy-makers. Building on our previous research that tested an explanatory model of health information privacy views with pre-operative joint replacement recipients, in the present study we explored privacy views and willingness to participate in registries among post-operative joint replacement recipients. Post-operative patients were asked to complete a self-administered mailed questionnaire. One hundred and fifty-seven of 173 (91%) eligible individuals were enrolled. Bivariate analyses were conducted using t-tests and one-way ANOVAs. Multivariable analyses were conducted using multiple linear regression. Overall, our previous findings that views about health information privacy are more predictive of potential registry participation than patient characteristics or health care experiences continue to hold true post-surgery. Certain health care experiences were found to play a role in health information privacy concerns, including hip versus knee replacement, primary versus revision surgery, and surgical complications. More variance was explained in post-surgery registry participation views than pre-surgery. In addition, gender differences in R2 values were smaller post-surgery. However, some aspects of the final models, such as gender as an effect modifier continued in the post-surgery study. Researchers and policy-makers should consider the impact of encounters with the health care system when seeking to understand patients’ privacy concerns and willingness to participate in registries.