Providers generally viewed PHRs as a patient-initiated and patient-maintained summary of a patient’s medical and health information from all of the patient’s providers. Several providers believed PHRs were tools that allowed patients to store their health data in one place and to share this with whomever they designated.
Patient Self-management of Care and Sharing of Health Information. In the PHR user discussions conducted for this study, NORC found that beneficiaries using MyPHRSC were interested in sharing content populated in MyPHRSC regarding their health, treatment and conditions. Some patients found value in the potential to keep their paper records at home while sharing the information electronically with their doctors. We asked providers about the kinds of personal records or information patients had shared with them, such as paper records, and how useful this was. Providers reported that patients had shared their blood sugar frequency lists, blood pressure measurements taken at home and comprehensive military records (TRICARE).
A few providers noted that when patients share their own personal records it saves time at the actual visit, allowing the doctor to focus on a patient’s needs. Providers also indicated patients’ management of their own care would help reinforce the provider’s recommendations for treatment, enhancing their trust in the relationship. A few providers expressed that the patient should ultimately trust the word of the provider and saw little utility in having access to patient information via their PHR.
Providers also noted that the elderly population has a greater need to be responsible for their own care, but they are less able to accurately recall health events and reliably maintain treatment and care at home. One provider indicated that patient records are often based on patients’ memories and thus the information shared is subject to recency and primacy effects (the most recent health events remembered or the most salient health events). On the whole, providers viewed patients’ sharing health information positively and perceived PHRs as a patient tool to enhance management of their own care.
Privacy and Security. Providers expressed concerns with the security of personal health information and indicated that, if stored in an electronic form, there was a higher likelihood that patient information would be accessed by insurance companies and the government. Concerns also included the use of online personal health information for data mining and public health purposes without proper consent. One provider shared a recent news story which indicated that Google was able to evaluate trends in influenza in the U.S. within the past 5 years in advance of the CDC because they mined all the inquiries they received. The group remained divided as to whether or not the benefits of this public utility outweighed the possible cost of data mining.