Patients with chronic kidney disease and their intent to use electronic personal health records

BACKGROUND Electronic personal health records (ePHRs) provide patients with access to their personal health information, aiming to inform them about their health, enhance self-management, and improve outcomes. Although they have been associated with improved health outcomes in several chronic diseases, the potential impact of ePHR use in chronic kidney disease (CKD) is unknown. OBJECTIVES We sought to understand perceptions of CKD patients about ePHRs, and describe characteristics associated with their expressed intent to use an ePHR. DESIGN Self-administered paper based survey. SETTING The study was conducted in Calgary, Alberta, Canada at a multidisciplinary CKD clinic from November 2013 to January 2014. PARTICIPANTS Patients with non-dialysis-dependent CKD. MEASUREMENTS Demographics, perceived benefits, and drawbacks of ePHRs were obtained. A univariate analysis was used to assess for an association with the expressed intention to use an ePHR. METHODS A patient survey was used to determine perceptions of ePHRs, and to identify factors that were associated with intention to use an ePHR. RESULTS Overall 63 patients with CKD (76.2 % male, 55.6 % ≥65 years old) completed the survey. The majority (69.8 %) expressed their intent to use an ePHR. CKD patients over the age of 65 were less likely to intend to use an ePHR as compared to those aged <65 years (OR 0.22, 95 % CI: [0.06, 0.78]). Those with post-secondary education (OR 3.31, 95 % CI: [1.06, 10.41]) and Internet access (OR 5.70, 95 % CI: [1.64, 19.81]) were more likely to express their intent to use an ePHR. Perceived benefits of ePHR use included greater involvement in their own care (50.0 % indicated this), better access to lab results (75.8 %), and access to health information (56.5 %). Although 41.9 % reported concerns about privacy of health information, there was no association between these concerns and the intent to use an ePHR. LIMITATIONS Our results are limited by small study size and single centre location. CONCLUSIONS We found that patients with CKD expressed their intention to use ePHRs, and perceive benefits such as personal involvement in their health care and better access to lab results. Studies of CKD patients using ePHRs are needed to determine whether ePHR use improves patient outcomes.