Federal government introduces health data interoperability legislation

TORONTO – At Women’s College Hospital in June, Mark Holland, Minister of Health, introduced the ‘Connected Care for Canadians Act’. The act aims to improve the access that Canadians have to their own health data, which should improve their decision-making and the care they receive. Pictured above, Kathleen Ross, president of the CMA, speaking about the need for better interoperability in healthcare IT at the e-Health 2024 conference.

The legislation also aims to make it easier for clinicians to access the data they need to make timely decisions about their patients’ health. On this note, the act calls for data standards that will allow better connectivity between electronic record systems.

“The truth is, data saves lives,” said Holland. “It has the power to transform the healthcare system.”

He added, “The legislation sets a framework … so patients can view their health data. And it takes the blindfolds off practitioners,” so they can make better decisions using the most up-to-date information available.

He referenced the case of Greg Price, an Alberta engineer who died of testicular cancer – something that can be cured when discovered and treated in a timely manner – because of delayed information transfers among the clinicians looking after him.

“We failed Greg,” said Holland. “His death was entirely avoidable.”

Greg Price’s sister, Teri, also spoke at the event. Since Greg’s death, her family has worked with the Alberta Health Quality Association to find out how it happened and how to prevent such tragedies in the future. One of the major findings was the lack of timely data sharing.

“Greg’s story isn’t unique,” said Price. “It’s part of many patients’ stories.” Much of the problem “touches on access to information.”

Holland agreed and acknowledged that interoperability is “critically important for our healthcare system.”

Yet today, less than 40 percent of Canadians report accessing some of their health information electronically and only 35 percent of physicians share patient information outside their practice.

“The fact that only 35 percent of physicians can share information outside their offices is unacceptable,” said Holland. “That we still use fax machines is unacceptable. And we shouldn’t have to force patients to remember all of their healthcare information.”

As noted by the federal government, delayed access to personal health information causes harm to patients – it can result in unnecessary or duplicative tests, longer wait times and hospital stays, and medication errors.

When health providers and patients have access to health information, there are decreased re-admission rates, increased accuracy of diagnosis, increased quality of care, and fewer deaths.

Connectivity will ease the burden on patients, families, and caregivers who must often recall and repeat their medical history. It also reduces stress on healthcare providers who are having to make decisions without access to all of the patient’s information.

Holland said that by connecting repositories of health data, we’re setting the stage for better AI-driven solutions. “It paves the way for a different future. We can employ AI to connect the dots, to see, maybe, that you have a rare disease.”

In a question and answer session after his remarks, Holland noted that standards won’t be imposed by law on companies that supply electronic health record systems. Instead, companies will be encouraged – and expected – to adopt the standards.

Holland observed that in many cases, the companies are benefiting from public funds when selling and deploying the systems. As such, they have a moral duty to share the data in their systems with the public and with clinicians using other solutions.

Currently, federal, provincial, and territorial governments are working together on common standards via a Pan-Canadian Interoperability Roadmap. It is designed to set the path forward to connected care through common interoperability and data standards.

The legislation aims to accelerate adoption of these standards and enable secure information sharing across platforms, but would only apply in provinces and territories that do not have similar legislation in place.

Dr. Kathleen Ross, president of the Canadian Medical Association, has been an active proponent of data sharing during her term as the organization’s leader. At the Women’s College Hospital event she said, “Access to data is critically important. Data is also a barrier, a hurdle that we have to overcome every day.”

She discussed the case of a pregnant mother who presented to her with a potentially serious condition. The patient had received an ultrasound, but Dr. Ross wasn’t able to access the results right away.

Under the circumstances, she had to make an educated guess about what to do and sent her patient home.

Dr. Ross was able to phone the next day to receive the ultrasound report – by fax. Luckily, she had made the right call. But she still laments having to work without the best information – data that was available, but not accessible.

“We do have pockets of data interoperability in Canada that could serve as models, but we need it across the country,” said Dr. Ross.