When 30-year-old Greg Price had testicular cancer in 2011, his journey through the health-care system was plagued by a lack of communication between primary care doctors and specialists, leading to delays in diagnosis and treatment.

Previously healthy and athletic, Price died at age 31 - just over a year after a routine physical to renew his pilot's licence found that a tube in his testicles known as the epididymis had thickened, which can be a symptom of testicular cancer.

Over the course of that year, Price, who lived in Acme, Alta., had lab tests, saw several doctors at walk-in clinics and was referred to three different urologists but none of them had the full picture of Price's symptoms.

At one point, a primary care physician faxed a referral to a urologist's office but the urologist was away so there was no response.

“Greg's medical history was scattered in bits and pieces across different charts in the places where he had sought treatment,” says a report issued Tuesday by Public Policy Forum, a non-profit group that brings together experts to tackle and advise on significant public issues.

The report cites Price's experience as a tragic example of out-of-date health records management in Canada and failure to harness digital technology to ensure a patient's complete health data are available to all members of their care team.

The forum says it is “sounding the alarm about Canada's chronic, subpar performance on data, the vital currency of a digital-age system.”

The report calls for all health records to be paperless and digitally accessible to all members of a patient's care team by 2028, noting that a first step is to stop using fax machines to transmit medical information and referrals.

There should be a single, comprehensive record for each patient that includes all health information, including electronic referrals and electronic prescriptions, says the report titled “Unlocking health care: How to free the flow of life-saving health data in Canada.”

“One of the dangerous assumptions that we made (as a family) is that the health-care system had sort of adopted technology at the same pace as other industries or were better,” Greg Price's sister, Teri Price, said in an interview.

More than a decade after her brother's death, Price said there has been some progress after his case was investigated and documented by the Health Quality Council of Alberta, an agency that brings patients, families and experts together to improve health care.

But it's not nearly enough, Price said.

The Public Policy Forum report also notes a long-overdue need for reform.

“To be clear, we are talking about much more than digitized health records, which would have constituted an achievement two decades ago but lacks ambition today,” the report says.

It also recommends that federal legislation be enacted to give patients ownership and access to their own health data.

Provinces and territories should also publish “a patient health data bill of rights that is fully aligned with federal legislation on ownership and consent over their own health data,” the report says.

The report also says that it's important that health data be accessible across provincial and territorial boundaries - a potential challenge since much of health care falls under provincial jurisdiction.

In addition, a digitally-based system would maximize the potential for patients to be proactive in their health and share useful data with health-care providers through wearable devices that measure heart rate and blood pressure, the report says.

Reforming how health data is used may not have been top-of-mind for governments and the public amid staffing shortages and other problems plaguing the health-care system - but it's an urgent issue that directly affects patient care, said Dr. Victoria Lee, one of the advisers behind the report.

“When you're competing for resources, digitization is not necessarily as attractive as say, building more beds or ensuring that we're able to roll out additional services. So I think often something like this can get a bit behind in the priority list because it's not a direct service,” said Lee, president and CEO of the Fraser Health Authority in British Columbia and clinical associate professor at the University of British Columbia.

In an emailed response, the office of federal Health Minister Mark Holland said “modernization of the health-care system” is one of the priorities addressed in the bilateral funding agreements with provinces and territories that are currently underway.

That modernization means implementing “standardized information and digital tools, so health-care providers and patients have improved access to electronic health information,” Christopher Aoun, the minister's press secretary, said in the email Monday, noting that there would be more announcements soon.

The Public Policy Forum recognizes people may be concerned about the security of their health data in a digital system.

That concern should be addressed by building strong, secure systems that patients can have confidence in, said Lee.

Patients should also be able to opt out of a digital system, says the report, but it warns the security risks are higher in a paper-based system with “pieces of paper, sent by fax, sometimes left to sit in piles accessible to any person in the area.”

This report by The Canadian Press was first published Jan. 30, 2024.