Understanding the Meaning and Value of Patient-reported Data using Personal Health Records within a Primary Care Network in Rural BC

Project Summary

Personal Health Records (PHR) are computer-based tools in which patients can keep a record of information about their health. This information or patient-reported data includes medications, blood pressure readings, exercise activities, and family health history. Some PHRs allow a patient to connect to their primary care provider usually a doctor or nurse practitioner and, in this way, they can manage appointments, view test results, and even communicate with their provider via videoconference, texting, or email.

The COVID-19 pandemic has made the use of these remote, or virtual, options for receiving care even more important. However, PHRs are not yet widely used and our understanding of their potential, their problems, and how to get the most value from them is limited.

To explore these questions, we conducted a two-phase study:

In Phase 1, we held focus groups to understand what PHRs mean to patients and providers, and what features of a PHR system would be most useful.
In Phase 2, we asked patients and their health care providers to use a PHR system, so that we could explore the value of the patient-reported data shared in this way.

Project Findings

Patients and providers had some similar but different ideas about the PHR:

They both thought it should be centered on the patient
- But, they thought differently about the types of information it should include and who should control it
Patients thought their health-related information was important, while providers emphasized the patient’s medical information
Patients thought they should control the PHR, and even though providers didn’t disagree, they admitted that the way things are set up currently leaves providers in charge of it

The PHR used in this study was supposed to let patients and providers add and share information, but because it wasn’t connected to the providers system for keeping patient information, and COVID-19 occurred at the same time, it didn’t happen easily.

But, a few patients used it, and even though it didn’t change their quality of life or their confidence in managing their chronic diseases, “keeping things the same” might be seen as a good thing—considering the pandemic might have made things worse.

One “shining example” we observed was a clinic that had everything in place so that patients and providers could communicate through a portal with secure email, messaging, video, online appointments, and a library of forms for patients to report on different aspects of their health.

It represents a true partnership between patients and providers, where patients feet safe and cared for 24/7, and both patients/providers are highly satisfied.

Infographics

Publications

Currie, L.M., Rush, K.L., Burton, L., Mattei, M., Gorges, M. (2021). Perceptions of personal health records in rural primary care clinics in Canada: Patient perspectives. Studies in Health Technology and Informatics, 284, 285-289.

Görges, M., Rush, K.L., Burton, L., Mattei M., Davis S., Scott H., Smith M. A., Currie L. M. (2021). Preferred functions of personal health records in rural primary health clinics in Canada: health care team perspectives. Applied Clinical Informatics, 12(01), 041-048.

Rush, K.L., Burton, L., Singh S., Smith M. A., Schaab K., Görges M., Janke R., Currie L. M. (2021). News article portrayal of virtual care for health care delivery in the first 7 months of the COVID-19 pandemic. Telemedicine Reports, 2.1, 108–117. DOI: 10.1089/tmr.2020.0033 https://www.liebertpub.com/doi/epdf/10.1089/tmr.2020.0033

Presentations

Sept 2021: “Lessons from an Attempted PHR Implementation: Rural Primary Care Practices.” Patient Advisory Committee Presentation.

Oct, 2021: “Understanding Preventive Care Needs, Self-Efficacy and Opportunities for Unattached Rural Patients in British Columbia.” Presented at the Alberta SPOR Unit Virtual Institute.

May 2021: “Patients’ Electronic Data-Sharing During the Pandemic.” Rapid Fire presentation at Canadian Nurses Informatics Conference.

Nov 2020: “Personal Health Records within a Primary Care Network in Rural BC: Learnings from Phase 1 Pre-Implementation.” Invited presentation to Rural PHR Partnership Committee under oversight of the Rural Coordination Centre and Ministry of Health

Oct 2020: “PHR – Contrasting Views of Rural Patients and Providers.” SPOR’s Putting Patients First 2020.

June 2020: “Addressing Rural Inequities in Healthcare.” Retired Teachers of Ontario Monthly Seminar Series.