What health information should be shared online? UCalgary researchers ask Albertans to weigh in on patient health portal access

This story appeared in UToday on October 26, 2017.
October 26, 2017

All Canadians will soon have online access to their personal health information. But how will people use their health information and how often will they access it? Will they want to share information with family members or other care providers? Are they concerned about the security of online records? University of Calgary researchers want to know and are asking for Albertans’ input.

Researchers at the O’Brien Institute for Public Health’s Ward of the 21st Century (W21C) within the Cumming School of Medicine (CSM) will lead a province-wide study to explore Albertans’ views about having online access to their medical records at their fingertips.

Sabrina Sullivan’s life completely changed when she was diagnosed with Type 1 diabetes just over a decade ago. In addition to seeing health care providers on an ongoing basis, she now manages her health using a number of different technologies, including an insulin pump and a continuous glucose monitor. She’s looking forward to a future where she has access to all her health records online when she needs detailed information about her past and current treatments.

“The more information you have about your own health, the more you are able to manage it,” says Sullivan. “I understand there are pros and cons to having that ability, but if you want access to your medical information, there shouldn’t be any barriers to you obtaining it. It’s your information, and it’s your health.”

Currently, patients need to visit their health care provider in person to obtain records, and often there is a fee to having those records copied.

“An online patient portal system could enhance confidential interactions between the patient and their care teams,” says Dr. Doreen Rabi, the lead investigator for the study and an endocrinologist in the Department of Medicine at the CSM, and member of the O’Brien Institute. “This could potentially improve continuity of care and empower patients to be active participants in the management of their own health.”

The research team wants to hear from people throughout the province. Findings from the study will be shared publicly with a variety of organizations to help increase knowledge and develop decisions around patient access to digital health information.

“There are a number of provinces leading the way in Canada to make health records available to their citizens,” says Dr. William Ghali, director of the O’Brien Institute at the University of Calgary. “These are incredibly exciting advances, but there is still little in the way of experience when it comes to success for online health record access in our country. Feedback from our communities will help to ensure that an online portal achieves its ultimate goal — to improve patient care and health outcomes.”

Other jurisdictions, such as Nova Scotia, Ontario and Saskatchewan are already implementing or piloting patient portals with the promise of significant improvements to patients and their health. “Once available, online health portals will hopefully offer peace of mind to patients and family members, while enabling them to be more actively involved in their own health care — no matter where they live, or what time of day it is,” says Rabi.

To participate in the survey visit . If you don’t have access to a computer you can take the survey over the phone 1-800-587-9580

Dr. Doreen Rabi also holds cross appointments with the departments of Community Health and Cardiac Sciences at CSM. She is an Alberta Heritage Foundation for Medical Research (AHFMR) Population Health Investigator.