Personal health records may be useful for patient self-management and communication in colorectal cancer networks

JMIR Publications recently published "Uses of Personal Health Records for Communication Among 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 (PHRs) may 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-tracking, self-management, and secure messaging. Patients and caregivers also saw information in the PHR as a useful memory tool given their visits to multiple doctors.

Providers had reservations about patients viewing raw data, which they were not prepared to interpret or might be inaccurate; patients and caregivers did not express any reservations about having access to more information.

Patients saw PHR communication functions as a potential tool for relationship building. Patients and caregivers valued the journal as a tool for reflection and delivery of emotional support.

PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational.

Dr. Thomas Carr from The Roudebush Veterans Affairs Medical Center said, "Personal Health Records (PHRs) have grown in popularity and functionality over time."

In the United States, patients with chronic disease represented the first target populations for PHRs; while their adoption rate is only slightly higher than that in the general population, patients with chronic diseases make greater use of PHR capabilities.

Providers have previously described secure messaging as having particular value for both themselves and their patients; however, providers also expressed concern about the inability of patients to share other types of information with their health care team and the impact on workflow.

In this study, the perspectives of patients, caregivers, and health care providers were all evaluated concurrently in relation to a PHR developed for colorectal cancer survivors.

Patient and caregiver engagement is important for the adoption of PHRs, whereas provider buy-in is critical to the implementation of these technologies in health care settings.

Across stakeholders, these authors explored several questions, including "Who should be provided access to, share information, and communicate with the PHR?" and "What type of patient-generated information should be incorporated into the PHR?" Finally, they asked how the PHR impacts workflow and what best practices may guide the future design and implementation of PHRs for patients with cancer.

JMIR HumanFactors: Uses of Personal Health Records for Communication Among 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 Publications Research Output that PHR perceptions are role-dependent, but there is marked consensus on many aspects of PHR design among stakeholders.

This suggests that a single, integrated tool can be designed to meet several identified patient needs, including self-tracking and self-management, as well as more informed and shared medical decisions.

Providers have unique concerns about the increased time burden and the accuracy of patient-entered data, and more fundamentally, how web-based communication tools may change the nature of the physician's professional role.

Patients perceive these tools as a potential pathway to personal understanding that can deepen their relationships with doctors.

Nonetheless, to realize this promise, patients and caregivers may need to search for and encourage health care providers to partner with them in exploring how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care.