General Perceptions of User-Friendliness. Most beneficiaries agreed that the PHR was easy to use once they logged into the system. Overall, beneficiaries would have liked the text in the log-in screen to have a larger font and for the log-in text boxes to be located more centrally on the page. Additionally, it was noted that the ability to change the font size within the PHR helped make the PHR easier for beneficiaries to read.
Accuracy of Data. Many beneficiaries noted that the PHR contained inaccurate information, including illnesses listed that patients did not believe they had, and incorrect or unrecognized physicians’ names. A few beneficiaries indicated that their illnesses were listed as “active” even if they occurred in the “past”, and beneficiaries were generally confused as to how an active illness was defined in the PHR.
“I don’t want my doctor to look at [the PHR] today because it is inaccurate or incomplete, [although] it may improve over time.”
Sharing their information with doctors was cited as an important utility of the PHR; however, several beneficiaries indicated the utility would be dependent on the accuracy of the information. Overall, beneficiaries noted that some information was inaccurate, but they would be interested in using the PHR if this information were corrected.
Logging in to the PHR. Beneficiaries reported a number of difficulties using the PHR; but overall they viewed the PHR as useful. The most significant issues for beneficiaries were focused around signing in to the main site, e.g., user ID or password lockout.
Many beneficiaries described having trouble signing in the first time, while a few reported it as easy. In order to log in the first time, beneficiaries often required assistance from the QSSI technical support. Some participants required technical assistance on multiple occasions in order to log in successfully to the PHR. It was challenging to enter the information for registering in the required proper format, and a few noted the system was quite sensitive. For example, MyPHRSC does not allow beneficiaries to choose their own ID, and proved challenging.
Much of the frustration around logging in for the first time revolved around using and remembering log-in user IDs and passwords. MyPHRSC provided a temporary password for beneficiaries, but beneficiaries often had trouble entering this correctly. One beneficiary noted that the password was in lower case but the user ID was in all capital letters with no spaces, requiring significant effort to complete correctly each time. This proved particularly frustrating since beneficiaries who used incorrect information a certain number of times were locked out of the system for 24 hours. Using and remembering their user IDs and passwords created a significant barrier to logging in to the system.
Changing Passwords after 90 Days. Some beneficiaries noted that they worked with technical support to log in properly the first time, but were unaware they had to change their password every 90 days. This confused them. Although security of health information is important to beneficiaries, when asked if it was worth having to change passwords every 90 days to ensure security, beneficiaries were divided, with some citing memory troubles. Beneficiaries all agreed that changing passwords every 90 days was challenging.
Technical Support Experience. NORC probed as to why participants continued to persevere despite their troubles of getting into the system. Many of the beneficiaries found that the technical support provided through e-mail and a toll-free number was helpful. One beneficiary noted: “Instead of calling, I e-mailed the contact, and the helpdesk was tremendously responsive and solved my problem quick.” Others agreed, suggesting, “The courtesy from [the helpdesk] is tremendous.” One beneficiary persevered because of the ability to view the spouse’s data first, stating, “If I hadn’t seen my [spouse’s] data I might not have pursued. I was frustrated but once I called, I spoke to [the helpdesk and] they worked hard to make sure my data got into the system.”
In spite of the usefulness of the toll-free (800) number and e-mail support, many reported receiving poor support when they called the second toll-free (877) number. Some indicated the technical help through the latter number included inconsistent information, and some were further directed to call Medicare’s general toll-free number (a third number), proving most challenging.
Delay in Population of Claims Data. A key challenge for beneficiaries included the time delay from an encounter with a provider until seeing the information in MyPHRSC. It is important to note that beneficiaries generally were not aware of the delays in submitting and processing claims, and these were issues outside of the PHR pilot. Some beneficiaries experienced a paper summary of CMS claims information arriving in the mail relatively quickly after a visit or other medical event. It was felt that, in order for the information in the PHR to be useful for them, it would need to be timelier.
Confusion Using Functions. Some beneficiaries reported that different MyPHRSC features were confusing to use, and this made using the PHR challenging. Beneficiaries mentioned that saving self-entered information for medications and allergies did not update and persist to the next use as was expected. Another noted that the PHR did not allow more than one item to be entered into the calendar, while others preferred a paper calendar with all pertinent events (beyond health care).