Meeting the health information needs of prostate cancer patients using personal health records

Background There is interest in the use of health information technology in the form of personal health record (PHR) systems to support patient needs for health information, care, and decision-making, particularly for patients with distressing, chronic diseases such as prostate cancer (PCa). We sought feedback from PCa patients who used a PHR. Methods For 6 months, 22 PCa patients in various phases of care at the BC Cancer Agency (BCCA) were given access to a secure Web-based PHR called PROVIDER, which they could use to view their medical records and use a set of support tools. Feedback was obtained using an end-of-study survey on usability, satisfaction, and concerns with PROVIDER. Site activity was recorded to assess usage patterns. Results Of the 17 patients who completed the study, 29% encountered some minor difficulties using PROVIDER. No security breaches were known to have occurred. The two most commonly accessed medical records were laboratory test results and transcribed doctor's notes. Of survey respondents, 94% were satisfied with the access to their medical records, 65% said that PROVIDER helped to answer their questions, 77% felt that their privacy and confidentiality were preserved, 65% felt that using PROVIDER helped them to communicate better with their physicians, 83% found new and useful information that they would not have received by talking to their health care providers, and 88% said that they would continue to use PROVIDER. Conclusions Our results support the notion that phrs can provide cancer patients with timely access to their medical records and health information, and can assist in communication with health care providers, in knowledge generation, and in patient empowerment.