Recently published JMIR publications “Uses of personal health records for communication between colorectal cancer survivors, caregivers, and providers: interview and observational study in a human-computer interaction laboratory” in JMIR Human Factors which reported that personal health records (PHR) can be useful for patient self-management and participation in communication with their caregivers and health care providers.
All groups noted the added value of linking the PHR to an electronic health record, self-monitoring, self-management, and secure messaging. Patients and caregivers also viewed the information in the PHR as a useful memory tool given their visits to multiple physicians.
Providers had concerns about patients viewing raw data, which they were unprepared to interpret or which may be inaccurate; patients and caregivers expressed no reservations about accessing more information.
Patients viewed PHR communication features as a potential tool for relationship building. Patients and caregivers valued the diary as a tool for reflection and for providing emotional support.
Perceptions of the PHR differed by role, with providers viewing the PHR as informative, while patients and caregivers viewed the tool as more relational.
Dr. Thomas Carr of Roudebush Veterans Affairs Medical Center said: “Personal Health Records (PHR) have grown in popularity and functionality over time.”
In the United States, patients with chronic diseases were the primary target populations for PHR; while their adoption rate is only slightly higher than the general population, patients with chronic conditions make greater use of PHR’s capabilities.
Providers have previously described secure messaging as having particular value to themselves and their patients; however, providers also expressed concerns about the inability of patients to share other types of information with their healthcare team and the impact on workflow.
In this study, the perspectives of patients, caregivers, and healthcare providers were all simultaneously assessed against a PHR developed for colorectal cancer survivors.
Patient and caregiver engagement is important for the adoption of PHRs, while provider buy-in is critical to the implementation of these technologies in healthcare settings.
Among stakeholders, these authors explored several questions, including “Who should have access, share information and communicate with PHR?” and “What type of patient-generated information should be incorporated into the PHR? » Finally, they asked how PHR impacts workflow and what best practices could guide the future design and implementation of PHRs for cancer patients.
JMIR HumanFactors: Uses of personal health records for communication between colorectal cancer survivors, caregivers and providers: interview and observational study in a human-computer interaction laboratory https://t.co/cy6f0lKe4O pic.twitter .com/mohlUsYJ75
-; JMIR Publications (@jmirpub) January 25, 2022
Dr. Cartmell and the research team concluded in their JMIR research publications that perceptions of PHRs are role-dependent, but there is strong consensus on many aspects of PHR design among stakeholders.
This suggests that a single integrated tool can be designed to meet multiple identified patient needs, including self-monitoring and self-management, as well as more informed and shared medical decisions.
Providers have particular concerns about the increased time burden and accuracy of data entered by patients, and more fundamentally, how web-based communication tools can change the nature of the physician’s professional role.
Patients see these tools as a potential route to personal understanding that can deepen their relationships with physicians.
Nevertheless, to realize this promise, patients and caregivers may need to seek out and encourage healthcare providers to partner with them to explore how emerging patient-centric technologies can be successfully implemented in the modern medical practice in order to improve the relational quality of care.
Haggstrom, DA & Carr, T., (2022) Uses of personal health records for communication between colorectal cancer survivors, caregivers and providers: interview and observational study in a human-computer interaction laboratory. JMIR Human Factors. doi.org/10.2196/16447.