Quebec aims to ease access to health data

QUEBEC – Finding it has been difficult to obtain patient and caregiver information during the COVID-19 pandemic, Quebec has proposed new legislation that would provide easier access to healthcare data. Bill 19 would create a database that includes information on every medical consultation with a patient, which that person could consult and check using a smartphone.

While mainly a response to the COVID-19 pandemic, which exposed flaws in the information system – Quebec could not find out how many workers were on duty or track early vaccinations – Health Minister Christian Dubé (pictured) tabled legislation he said will “ease the flow.”

The Quebec health system costs taxpayers $50 billion a year to operate and employs 340,000 people.

“Yes, it’s a colossal job but a necessary one,” Minister Dubé said at a news conference to explain Bill 19. “The pandemic shed light on the weak points of our health system. Data problems were part of the equation. “We don’t want to re-live this. We want to ensure a fluid movement of information.”

Quebec now has 9,000 data platforms operating in 34 regional health and social service authorities scattered in 17 regions, Dubé said. The system is essentially hospital-focused, which traditionally means data stored in file folders.

When it comes to patient information, hospitals are reluctant to share it for privacy reasons, which Dubé said can make it hard even to get test results passed along the chain to medical personnel involved in a person’s care.

Another example of the convoluted system cited by the minister: While there are 8 million Quebecers, there are 30 million hospital cards in circulation, with patients holding multiple cards for different hospitals. This system can hamper a patient on the South Shore, for example, from getting care in the city.

“And that’s just an example of all the files, all the systems connected to the same patient,” Dubé said. “The idea is that those 8 million patients will be able to move around Quebec.”

The complexity of the system and lack of up-to-date data caught the government off-guard during the pandemic.

In a report released last week, Quebec ombudsperson Marie Rinfret mentioned that one of the government’s shortcomings was its ability to assess the level of risk involved in transferring hundreds of hospital patients to CHSLDs, Quebec’s long-term care centres.

One reason was a lack of information about what was going on in CHSLDs at the time – from staffing levels to the amount of personal protection equipment available.

Premier François Legault has defended his government’s handling of the pandemic, saying it did the best if could with the available information.

When Dubé took over the Health Ministry, he vowed to tackle the bureaucracy in the system. Bill 19, he says now, aims to “modernize and decentralize” the whole network.

Among other measures, under the bill, medical information is to “follow the patient” so that, for example, it eventually could all be readily available on a smartphone. The database would include information on every medical consultation with a patient, which that person also could consult and check to see who else accessed the data. Local healthcare managers would have access, as would researchers under strict conditions.

Under this new system, governments will be better able to plan actions, Dubé said. He conceded this will take time, but noted Quebec was able to get the Clic-Santé appointment system up and running relatively quickly.

Still, Dubé issued a warning: “It is my experience, as a manager, that such culture changes take time,” he said. “What is important is to do things in stages, to take the right actions. I am asking people to be patient.”

The Coalition Priorité Cancer heartily endorsed the bill, saying it “represents a paradigm shift in health data management” and has “an important potential for patients and to accelerate cancer research in Quebec.”

Bill 19 will be sent to the legislature’s health and social services committee for study. Public hearings are planned.