Use of, Preferences for, and Expectations Regarding Personal Health Records among People Affected by Cancer: Results of a LIVESTRONG Survey and the 2008 Health Information National Trends Survey

Personal Health Records (PHRs) have the potential to benefit health care consumers who are working to maintain health or navigate a health crisis. In 2010, LIVESTRONG collected an on-line survey to measure preferences for and expectations of PHR functional capabilities. The results were analyzed across four groups: individuals on treatment for cancer (n=428); living with cancer as a chronic illness (n=296); post-treatment cancer survivors (n=2315); and individuals without a personal history of cancer (n=5251). The survey used items from the 2008 National Cancer Institute´s Health Information National Trends Survey. Less than half of respondents had used a PHR. The functional capabilities focused on helping users to actively manage and organize their health information were rated highest. Rated lowest was the desire to engage in social networking via the PHR. We discuss implications for continued design and implementation of PHRs in cancer and health care.