Quebec’s patient health portal is still ailing

MONTREAL – Nearly two years after the provincial government announced the Carnet santé Québec, a personal health portal that has cost nearly $9 million, critics are still pointing to problems and the disappointing capabilities of the product.

According to the Montreal Gazette, some patients have complained of delays of six months in being able to read their latest medical-imaging reports online, as well as other information gaps.

As for scheduling an appointment online, most clinics have yet to join the Quebec Medical Appointment Scheduler.

Even registering with Carnet santé Québec is a cumbersome and time-consuming process, said Alexandre Allard, president of the province’s association of medical archivists.

“It’s complicated and hectic for some segments of the population,” Allard said of the two-step registration process.

He added, “From our point of view, the goal of giving the population access to their medical information is a good thing. But a lot of time has gone by without much development. I guess that I would give the government a mark of C minus. It’s not a total failure, but from our point of view, there should have been (more) investments (to make the system better). That’s because the next big turning point in the Health Ministry is in the information field.”

Former health minister Gaétan Barrette announced the digital health booklet in December 2017. The system rolled out across the province on May 17, 2018, managed by the medicare board, the Régie de l’assurance maladie du Québec.

The goal was to have 341,000 Quebecers sign up by the end of 2018. The government achieved that target last January, and today 457,736 Quebecers have access to at least some of their medical files online.

But like the much-hyped Dossier santé Québec – the government’s decade-long attempt to switch from paper to mostly digital medical files across the health network in a centralized database for clinicians – Carnet santé has been plagued with problems from the outset.

Critics argue that Carnet santé Québec was hobbled from the beginning, since it doesn’t include any hospital files – just radiology reports and blood-test results from clinics and doctors’ offices, as well as prescriptions from pharmacies.

“We still have problems with the computerization of information coming out of the hospital,” said patient-rights advocate Paul Brunet, of the Conseil pour la protection des malades. “It’s still not accessible. So of course, you’re lacking something important.”

Another omission is vaccination records – a sore point for Allard, who represents 1,700 medical archivists.

“The vaccination information should have been put into Carnet santé Québec,” he said. “The public wants this. We need to be able to access all the information about immunization, for kids who are going to school and for people who are traveling around the globe. They have to know what immunization shots they got and what is missing.”

Before you can even sign up for the digital health booklet, you must set up an account with clicSÉQUR, the government’s online authentication service. Most people who have a clicSÉQUR account must have their identity verified by Revenue Quebec, a complicated process that requires submitting their social insurance number and the assessment number of their latest income tax return.

Once you succeed in obtaining a clicSÉQUR account – no small feat for the bureaucratically challenged – you have to apply for a 4-digit activation code to register with Carnet santé Québec. The code usually arrives in the mail about a week later. You then enter the code in the system and are granted access online to some of your medical information.

That includes your prescription medication, downloadable radiology reports and blood test results. The medical-imaging reports contain typed observations by a radiologist. The blood results, however, are almost impossible to decipher without the help of a family doctor.

The system allows one to plot blood results on graphs over several years, but without a doctor’s explanation the graphs are hard to understand. For example, a patient can view his or her “mean corpuscular volume” on a graph, but without any explanation about what the numbers actually mean. The information can also be displayed as a table of stats.

Allard agreed that much of the information online is meaningless to the layperson.

“We shouldn’t be here to promote Dr. Google,” he said. “Give patients access to their information with the support of their physician.”

Allard did note some progress with the system, observing that there are virtually no more cases of patients learning of a serious diagnosis online without first being advised by their physician after a slew of such incidents were reported.

Although the previous health minister oversaw Carnet santé Québec, the Coalition Avenir Québec government has relegated the responsibility to junior health minister Lionel Carmant (pictured). In March, Carmant told TVA Nouvelles that the government is eager to make improvements to the system.

“It will become a new vaccination booklet with more information about vaccines and allergies,” he said at the time. “We want to encourage people to take charge of their health.”

Stéphanie Beaulieu, a spokesperson for RAMQ, said the medicare board has not encountered “any major obstacles” since establishing Carnet santé Québec.

However, she did say that RAMQ is trying to simplify the process of signing up. And she insisted that the government has gone to great lengths to protect confidential medical information from hacking.