The Minister of Health, Christian Dubé, tabled a bill on Friday to promote the sharing of health data for Quebecers, especially for researchers. Ultimately, he wants all Quebecers to be able to access their medical records on “their phone or computer at home”.
Bill 19 is one of the three pillars of the “health transformation program” launched by Minister Dubé. It constitutes the “data” axis of the overhaul, and will be followed by a major upgrade of IT systems.
The legislative text aims to “improve the quality of services offered to the population” and to allow management of the health system “based on knowledge of people’s needs and the consumption of services”.
He proposes to eliminate the notion of consent so that the medical data of Quebec patients can be used to carry out a research project carried out by public bodies (such as the National Institute of Public Health of Quebec or the Régie de l ‘). health insurance of Quebec) or, in certain cases, private (such as the Corporation d’Urgences-santé or Héma-Québec).
It also aims to create a “research access center”, the mandate of which would be to determine whether researchers, in the private sector in particular, could have access to the health data of Quebecers.
“For me, it is a priority to be able to seek the benefits of research with the private sector, but that the data remain in the government”, insisted Minister Dubé. “That, for me, is not negotiable. “
The minister said he wanted to give researchers, both internal and external, “the possibility of using data in an environment of trust, in an organized manner”.
“When academics look at the Quebec health system, we have the advantage of having a pool of eight million people on whom we could research. But it is excessively difficult for our various researchers to have access to this information in a security context, ”he continued.
Gather patient information
Mr. Dubé’s bill also aims to improve the sharing of information on patients between establishments in the health network. ” [L’idée, c’est] to be able to allow the doctor who treats us, the nurse who treats us, to have access to our file, to have access to our history, to know that I am taking this or that drug, that I have not seen my doctor for three years ”, illustrated the minister. “It seems trite to say that, but we’re still in the 80s on that.”
Mr. Dubé also stressed that during the first wave of the pandemic, “the lack of information in real time was critical”. He recalled that the Ombudsperson denounced this “information deficit” in her report on the management of the first wave of the pandemic.
From now on, “the data must follow the patient”, insisted the minister. He illustrated the inconsistencies of the network by recalling that in Quebec, “we have 30 million hospital cards and eight million patients”.
Ultimately, the government wants Quebecers and physicians to be able to access all of their medical data on a single platform. But “one cannot wait for a perfect file”, argued Reno Bernier, associate deputy minister in the general direction of the technologies of information. “So what we are currently doing is finding interface or interconnection solutions between existing databases,” he explained.
Despite the “archaic” nature of the 9000 computer systems that currently exist in the network, Mr. Dubé has minimized the risk of “slippage”. He recalled that his bill gives the Committee on Access to Information (CAI) a mission of monitoring and promoting the protection of information. The CAI would also be notified in the event of “confidentiality incidents”.
Human resources information
A provision of the bill must also allow the Minister to obtain access, from institutions, to “statements, statistical data, reports and other information that he requires on his human resources, including the professionals there. students and trainees exercise their profession ”.
The Minister denies wanting to obtain nominative information about workers. However, he wants to transfer the denominated information to the CEOs. for, for example, “to push someone to do a different intervention”. “I’ve never seen personal data and I don’t want it,” he said.
A month ago, the Prime Minister, François Legault, had however said to have in hand an exhaustive list of doctors who do not meet his care requirements. “We are starting to identify them,” he said.
Mr. Dubé assured that the provision of the bill was not intended to increase its possible balance of power in negotiations with health professionals. ” [Ce] that we want to understand is: Why a GMF [groupe de médecine familiale] who has the same budgets as another is not able to have so many patients? », He illustrated. The goal, “is to be able to know: Quebeckers, are they getting their money’s worth with that? “
Fears in the oppositions and unions
In a press briefing, the member for Quebec solidaire Vincent Marissal said of the bill that “it seems to open up the possibility of personal information being used quite widely, even for private purposes”.
He stressed that his political party opposed the “commercialization” of the personal information of Quebecers. “Pierre Fitzgibbon, made this assumption of giving the personal information held by the RAMQ, in particular to researchers in the pharmaceutical field”, he recalled. The Minister of the Economy had said in August since 2020 wanting to “attract” pharmas “” so that they take advantage of the “gold mine” that constitutes the health insurance data of Quebecers.
Mr. Marissal was also concerned about the monitoring mandate given to the CAI. “We give another mandate to this vehicle from the 80s, which essentially no longer has an engine and which runs with a few less cylinders. So that too, on that, I want to be very, very, very vigilant, ”he stressed.
At the Parti Québécois, MP Joël Arsenault said he intended to “participate in the work [sur le projet de loi 19] with interest and diligence ”. He praised the government’s intention to improve access to data “in the massive bureaucratic machine” of the Ministry of Health. “But the government must work quickly to reform the front line and to decompartmentalize professions to ensure better access to health care for Quebecers”, he pleaded.
The Fédération de la santé et des services sociaux (CSN) also said it believed that it was “a little reductive” to believe that the transmission of information was the necessary foundation to improve the network. “What it takes first and foremost is better planning, good working conditions and more autonomy for the work teams,” argued the union.
“Once again, we seem to want to go through paperwork without tackling the root of the problem: the efficiency of the first line, access to a family doctor and good working conditions in order to promote the attraction and retention of staff, ”also reacted the Federation of Workers of Quebec. “The FTQ has always campaigned for the protection of the right to privacy and remains reluctant to allow information to be shared without the user’s consent. We are therefore going to take the time to study the bill and fully intend to participate in the public debate, ”indicated its president.