My Health, My Rules: Personal Health Records Challenges and Perspectives
Personal health Records (PHR) allow patients to have access to their lab results and prescriptions. However, if the patients had the power to see and monitor these data (that actually belongs to them) would this improve their overall self-management and responsibility towards their own health?
PHR as A Part of The Whole System
Personal health records (PHR) can be interoperable with electronic health records (EHR) by having an institution that has authority and priority on health information standards. This institution should focus on capability-building, establishment of standards and interoperability, and connectivity. This institution should regulate and could also provide a system to ensure consistency in data provision and input. PHRs should also be monitored with related identifiers/keys with EHRs to ensure proper records match throughout the entire system. In 2005, an institution that could have been of authority was established through partnership and was called the Philippine National Health Information Infrastructure. This was a partnership between the Department of Health, the Department of Science and Technology, the Philippine Health Insurance Corporation, the University of the Philippines Manila, and the Philippine Medical Informatics Society. However, there were no prominent signs of PHR utilization in this partnership, along with infrastructure challenges faced and poor support from the government despite calls that in the end did not allow for the prosperity of its goals.
Challenges of PHRs
With an idea of this scale, there are also many challenges to be faced in implementing personal health records. The first one would be the need of patient acknowledgment. This patient acknowledgment is more focused on having the patient realize that they do have control over their medical records. If patients do not acknowledge this, patient data handling will revert to the old ways and have them stored within the authorities of the providers.
In line with this, the most likely resistance to be encountered with patient-centric data handling would be the service providers. Having the deployment of PHRs would require providers to invest in additional equipment to view data from personal records. Considering the type of data stored, investments in data security on a provider and government/institution’s end would also need to be increased which would again require additional financial resources and infrastructure. These security and data consistency efforts should also be able to address the encryption of patient data to prevent tampering from both patient and foreign entities posing a greater challenge than it already is.
From a Patient’s Longterm Perspective
In retrospect, about 80% of the total adults have one chronic illness in the US. This could be used as an indicator regarding the use of PHRs in monitoring long-term diseases. In the study of Gee PM et al. on patient perspectives towards PHRs in 2015, there were four themes identified that express the perceptions of each patient. The four themes were:
· Patient engagement and health self-management
· Access to and control over personal health data
· Promotion of productive communication
· Opportunities for Training and Education
It was found that patients felt more involved and in control of what they were doing to their health. They were also keeping track of their laboratory and diagnostic results while also planning for upcoming consultations and possible treatment courses. With their access in their data, they were also able to correct wrong information encoded in the PHR and EHR systems. It was also noted that the patients also wanted to improve their results from their previous tests, which in some sort shows some kind of encouragement. Access to their PHR with massaging platforms also allowed them to directly communicate and address problems that they are facing regarding their health. It is worth noting that patients have mixed views regarding who sees their conversation with the providers. Lastly, patients do emphasize the need to have training or a briefing of some sort on how to navigate these records. A lot of these patients thought that they were not maximizing the use of the system along with how they should use the system in communication with providers.
At the end of the day, we serve the patients. Taking charge of one’s health on their own allows better progression throughout their treatments. After all, as a patient, you know yourself more than anyone else. As providers, we should provide them an avenue to do something about it and help us help them.
References:
Marcelo AB. A Framework of Personal Health Records in the Philippines.
Roehrs A et al. Personal Health Records: A Systematic Literature Review. JMIR 2017; 19(1):e13.
Gee PM et al. ePatients Perceptions on Using Personal Health Records for Self-management Support of Chronic Illness. Computers, Informatics, Nursing 2015; 33(6):229–237.
Kim, M. I., & Johnson, K. B. (2002). Personal health records: evaluation of functionality and utility. Journal of the American Medical Informatics Association : JAMIA, 9(2), 171–180. https://doi.org/10.1197/jamia.m0978
