Should you have a copy of your medical record? These experts say yes

As cyberattacks become more common in the health-care sector, experts say Canadians should have a copy of their medical records.

In this digital age, experts argue that having a copy of health records gives patients more control and authority over their care — particularly if those records become inaccessible to health-care providers.

"We should have immediate, easy, digital access to it so that we are informed of what's going on in our own health and in our own lives," Tracie Risling, member and past president of the Canadian Nursing Informatics Association.

"I think it helps patients to feel more empowered in their own care."

Five southwestern Ontario hospitals impacted by a ransomware attack last month are still trying to recover their systems — a process that is expected to take until mid-December. But with systems down, some patient procedures and treatments have been stalled.

In a joint statement last week, the hospitals said that while systems are down, doctors might not have access to a patient's past records or medical history, a person's current list of medications or reports from other clinicians involved in their treatment.

Without access to this information, care for some people is up in the air.

One family doctor in Windsor also told CBC News last week that because he can't access information from the hospitals, he's relying on patients to fill in the gaps.

TransForm, the IT provider for the hospitals hit by the cyberattack southwestern Ontario, declined a request for comment. As the company works to restore the systems, it's still unclear whether hospital backups were destroyed and whether any patient data was lost.

No province-wide patient portal

Currently in Ontario, there is no province-wide health portal that gives people access to their electronic health record. Both the federal and provincial governments say they are working toward this.

Governments and health-care organizations have partnered with Canada Health Infoway — a pan-Canadian institution that is creating a national electronic health record platform for all Canadians.

The 10-year plan from Canada Health Infoway is still in its early stages, and some provinces are further along than others when it comes to upgrading their technology.

When asked about having a system like this, the provincial Ministry of Health said in an email that it is "working towards creating a more integrated patient record system."

Companies fill the void

Right now, the province has a system that only health-care professionals can access called ConnectingOntario. The portal provides up-to-date information on a patient's health records, including their medications, lab results, diagnostic imaging reports and recent hospital visits.

When it comes to giving patients access to this information, some Ontario hospitals have created their own portals or partnered with companies.

Toronto-based company PocketHealth is one of them.

Co-founder Rishi Nayyar says the company is connected to more than 600 hospitals in North America, giving more than one million patients access to their health records.

In southwestern Ontario, Nayyar says they are only partnered with Windsor Regional Hospital.

Through PocketHealth, patients can pay $10 a month or $49 for a year's worth of unlimited access to their medical records. For those needing financial assistance, Nayyar says the company has a program in place to help.

"When it comes to something as important as your health, you should have the most up to date record, just like the hospital will … so you know what's happening, so you can read the reports yourself so you can walk into your doctor's appointment actually educated," he said.

Since the cyberattack took place, Nayyar says they disconnected from Windsor Regional to protect their own systems. Until that connection is turned back on, patients won't be able to see any new information, but still have access to their historical records.

Risling, who is also an associate professor in the faculty of nursing at the University of Calgary, says Canadians shouldn't have to pay to access these records.

"It's not something that should be an exclusive option, it has to be an equitable option," she said.

"We've already had problems and inequities in how health care is delivered and I don't want electronic health record access for patients to be another example of that."

Added risk to having multiple copies

And while cybersecurity expert David Shipley agrees that having a backup of your medical records is "smart," he says it also comes with added risk.

"Now individuals are going to be trying to protect their data and most Canadians are not prepared to protect that kind of sensitive data and there are no technological silver bullets that I can say guarantee that this data is safe," said Shipley, who is the CEO at cybersecurity organization Beauceron Security.

"Is that risk worth it when we talk about patient empowerment? I think so."

Shipley says he's encouraged by the patient portals he is seeing in some provinces, like New Brunswick, but notes that this requires continued investment in health-care IT.