Health Care Priorities. Beneficiaries in this evaluation reported that their most important health care concerns included: continuity of care, reduction of healthcare costs, managing their spouses’ care and self-managing conditions such as diabetes. Beneficiaries also indicated that coordination of care in a fragmented system was an important health care priority for them. It is important to have an understanding of beneficiaries’ health care priorities in other to identify their needs and expectations for PHRs and the functions they desire in PHRs. Certain health information and supporting features and functions may be more relevant to some users than others.
Health Information Management. Beneficiaries in the discussion groups and user observations revealed that they maintained paper medical records, and one beneficiary preferred this method to using a computer. Beneficiaries also reported using calendars for appointments, and keeping files for medical records and medical bills. Some beneficiaries used computer databases to store information on medications or track conditions.
Beneficiaries’ methods for storing health information varied based on the type of information in question. In user observations studies, NORC found that much of the personal health information which beneficiaries kept fell into the just-in-case (when information is kept away but reasonably accessible) category as opposed to the just-because category (when the information is kept in the household but no other storage strategy is assigned because of a temporal relevance). Other information was stored as older records (comingling medical and tax information) in less accessible locations, such as the attic (the just-in-case or just-because categories). Contact information, both for health providers and emergency contacts, fell under the –just-at-hand (when information is stored in a visible or readily available, familiar location) storage strategy and was often kept in very accessible locations. Some participants carried their personal health information, with some participants using the MyPHRSC Wallet Card for that information. Use of this technique, where information was kept with a household member at most times, fell into the just-in-time category.
Data Ownership. Beneficiaries viewed themselves as the primary owners of their own health information, and most had established mechanisms for managing their own care.
Information Sources. Beneficiaries employed different methods for obtaining medical information. Some participants kept general medical reference books in their office or den. Some also received medical newsletters, although they would only keep articles they found useful and not store all copies of the resource. Many of the paper copies of reference material were stored using the just-because strategy, where no specific storage strategy is used. Beneficiaries who participated in the discussion groups also revealed that they frequently used the Internet to search for health information.
Internet and computer experience. Results of the environmental scan showed that the elderly are less likely to have experience using computers, access to the Internet, and broadband connection than those under age 65. At the same time, an increasing number of older adults are accessing the Internet. In 1996, only 2 percent of adults 65 and older were ‘online’, and by 2004, that number rose to 22 percent. In general, beneficiaries from the user observations, discussion groups and semi-structured interviews often used the Internet and owned computers at home. Most described themselves as being relatively comfortable using these technologies, although there were a handful of beneficiaries who did not consider themselves computer savvy. Beneficiary discussion groups revealed that physical difficulty accessing the home computer, such as being unable to climb the stairs when a computer was located on a second floor at home, was an impediment to PHR use.
Privacy and Security. Although discussions with both users and non-users of MyPHRSC revealed some security concerns with the PHR, many suggested that having access to information and being able to share with providers and other care-givers would outweigh the risks. Similar findings emerged in the environmental scan where consumers cited major concerns with the security and confidentiality of information contained in PHRs but suggested that the convenience of access to their information and the ability to share this with others would be more important. 
User Demographics. Fifty-three percent of MyPHRSC registrants were male and forty-seven percent were female. On the whole, the Medicare population tends to be female (56 percent) and this trend is also reflected within South Carolina where fifty-nine percent of Medicare enrollees are women. The statistics in this study suggest that men were disproportionately likely to register for MyPHRSC. Therefore, the gender composition of registrants is significantly different from what would be expected for both the general Medicare population and for MyPHRSC users.
Although it was hypothesized that women would be more likely than men to use MyPHRSC, analysis of usage data showed that men were significantly more likely to return to MyPHRSC and log in after initial registration. Additionally, women were no more likely than men to log-in to MyPHRSC more than once or for multiple months of the pilot.
Registrants of MyPHRSC ranged from 26 years to 99 years of age, with the majority of beneficiaries being between 65 and 74 years of age. Individuals aged 65-74 were more likely to register for MyPHRSC and individuals under 65 or over 75 were less likely to register than would be expected from the age distribution of Medicare beneficiaries in South Carolina in 2007. The ages of MyPHRSC registrants, therefore, also differs significantly from those of the South Carolina Medicare population.
PHR users were defined as individuals who logged on to MyPHRSC once or more over the course of the pilot. Contrary to hypothesis, younger beneficiaries (those aged 64 and under) were not significantly more likely to use MyPHRSC than their older counterparts. In fact, individuals between the ages of 65 and 69 were slightly more likely to return to MyPHRSC and log in after initial registration. However, members of the 65 to 69 age group were also less likely than others to log in to MyPHRSC more than once. This may suggest that beneficiaries between the ages of 65 and 69 are particularly interested in a personal health record application, but that MyPHRSC did not satisfy their needs. Additionally, it is possible that Medicare beneficiaries in the 65 to 69 age group do not have significant medical illnesses that require constant monitoring and that they are less likely to make use of a tool like a PHR.
Uptake of MyPHRSC. While there are no industry standards on what is considered high uptake of PHRs, the NORC evaluation found that the majority of beneficiaries who used MyPHRSC logged in during only one calendar month of the pilot and over one-quarter of registrants never logged in to MyPHRSC. The latter group may not have received sufficient incentive or information on the value of using MyPHRSC, and the former group may not have seen information or features of sufficient value to encourage repeat use. In light of the initial 48-hour delay between registration and when a beneficiary can view his or her information in MyPHRSC, follow-up communication by e-mail may be useful in encouraging registrants to return to MyPHRSC and log in, particularly if the message alerts the beneficiary that his or her information is now available.
There are several reasons that participants might have chosen not to sustain use of the PHR after registering and initially logging in. One reason cited for not using the PHR was that it did not fit into the beneficiary’s regular Internet “workflow”, and this may have been a contributing factor to forgetting to use the PHR. Additionally, it is possible that beneficiaries may not have understood the value of continuing to log in to MyPHRSC to review their claims information over time, did not find the content useful or compelling enough to return or otherwise did not have sufficient incentives to encourage continued use. Discussions with users and nonusers also indicated that reasons for not using MyPHRSC included being too busy or being otherwise healthy. One of the key challenges that also prevented users and nonusers from continuing use of the system was related to remembering log-ins, user IDs and passwords. Similarly, it was challenging for beneficiaries to have to change their temporary passwords every 90 days.
Illness/Condition Diagnosis. Chronic illness is highly prevalent among members of the Medicare population—especially the elderly. One survey of Medicare beneficiaries indicated that 65 percent of all elderly people had two or more chronic conditions, and 34 percent of seniors reported limitations in mobility or activities of daily living. Another report found that patients with five or more chronic conditions represented 50 percent of the Medicare population. PHRs can be particularly useful to patients who have serious or chronic conditions.
A survey conducted in 2007 by the Foundation for Accountability (FACCT) as part of the Markle Foundation’s Connecting for Health Collaborative found that those with chronic conditions reported the highest interest and most urgent need to use PHRs. These individuals also perhaps have the greatest motivations for using PHRs. Based on this, our study hypothesized that there would be greater use of the PHR among registrants with the aforementioned chronic conditions of high blood pressure, coronary artery disease, heart failure, diabetes, chronic obstructive lung disease, asthma, osteoarthritis and cataracts. Usage data analysis showed that, contrary to the hypotheses, there were no consistent patterns of PHR use based on illness diagnoses. When all beneficiaries with at least one selected chronic condition were pooled together, there was no increase in the likelihood that these beneficiaries would return and log in to MyPHRSC after registering compared to beneficiaries without any of the specified chronic conditions. Beneficiaries diagnosed with high blood pressure, heart failure, chronic obstructive lung disease, or asthma were no more or less likely to return to MyPHRSC and log in after registering than beneficiaries without these conditions. MyPHRSC currently does not include information on laboratory test results and tracking of these results over time. It is possible that if these functions were available we may likely see an increased use of the PHR by patients with chronic conditions. We also note that the study period was only a year and that this may not be sufficient time to draw conclusions on linkages between chronic conditions and PHR use.