Most Valued Features and Functions. Many beneficiaries commented that the Wallet Card was particularly useful for them and they especially liked the ability to print this to carry with them. One beneficiary commented: “I thought the card would be good to have when we travel.” Most agreed that having this information on hand while traveling would be useful, and one couple mentioned they would like to have it with them on their next vacation. Many beneficiaries also noted that Medicare had provided them with an index card but it lacked the depth of information in the PHR wallet card. Participants thought it was particularly useful to carry a concise list such as medications, surgeries and past hospitalizations, so as not to take up too much space.
Beneficiaries were also impressed with the completeness of the information in the Health Record Summary and Claims pages. They thought the PHR provided more comprehensive information than paper summaries from other health plans like TRICARE and Medicare, which include only the cost and/or dates for services and the physician’s name. Participants also noted that paper summaries can be hard to read, and liked that they could easily adjust text size. One beneficiary noted, “When you open [the PHR] you see the diagnosis, the doctor name and the date and it is clear to understand.”
Participants reported that it was useful simply to view all their medical claims from the past two years in one place. Although many beneficiaries also maintained paper records, they noted that having access to 2 years of claims summaries emphasized the number of medical encounters they experienced. This was particularly beneficial for those with short-term memory deficit. One beneficiary noted that the calendar feature could be helpful for tracking appointments and medications in one place.
Reasons for Using. Many beneficiaries initially logged into the PHR out of curiosity. Some participants used the PHR to update and print their wallet cards, and a few reported using the PHR to print the healthcare summary. One couple used the PHR to enter prescriptions that Medicare would not pay for so it could be conveniently tracked. Many participants used the PHR to view their past claims information.
“I have several doctors but it is up to me to maintain my health records. I cannot get [my doctors] together at one time so I need to keep them informed.”
“It is always nice to have a list of all the medications you are taking because [doctors] always ask that question. If you bring all [of your medication bottles] in to the doctor, you have to carry a sack full of these on your shoulder.”
Key MyPHRSC Benefits. Although participants reported varying levels of experience using the PHR, a majority agreed the PHR could be a useful tool for them to manage their health or healthcare. Beneficiaries thought that the PHR helped them keep track of historical medical events (e.g. longitudinal record), and many reported that having the information in the wallet card at hand while traveling would be very helpful for them. The ability to have all of one’s health information stored in one place was also seen as a potential benefit of continued use of the PHR. Although participants had not shared their records with providers, they thought the PHR could be more useful if also used by their providers.
One participant found that having the medical history gave a new view into specific health conditions. Others agreed that they liked having a history of their records with one beneficiary suggesting that sharing this information with providers could be valuable: “I like that I can add my history, but I really like that, if I have to get a new doctor, I can look at the form that shows everything that happened to me and give this to the new doctor. This is good, if you have to move, as a history.”
Management of Personal Health Information. Many beneficiaries reported that they believe they are the primary owners of their own health information, and they are responsible for managing their own care, so they should “own” the personal information stored in the PHRs. One participant commented, “I don’t think doctors will pay attention to what is in there, it is key for me and my [spouse] and my family to know what is wrong with me and if I get to a place where I cannot convey problems they have a history to look at.”
Although there was some disagreement as to who should own the PHR, beneficiaries generally agreed that it is important to remain informed about one’s own health and health care through appropriate communication.
Privacy and Security. Many beneficiaries indicated that they were concerned about the privacy and security of their health information in the PHR, but would be willing to share the PHR with trusted sources such as a provider or caregiver because this would be valuable for them. A few participants indicated little concern about privacy and security. Providers can gain value from the PHR information shared, which “is more important than [being concerned] that you are putting it out there and someone may see it.” Beneficiaries reported that they would not want their personal information used against them, and many did not realize the potential impact of fraudulent claims.