(Quebec) The Minister of Health, Christian Dubé, wants to give himself the legislative tools to decompartmentalize access to data from the imposing health and social services network. Bill 19 must make the sharing of information “fluid” for the patient, the professional, the manager and the researcher. OVERVIEW.
“The data must follow the patient”
Bill 19 on health and social services information and amending various legislative provisions may allow patients to have better control over information relating to their medical records. It is the data that will follow the patient and not the opposite, illustrates Minister Dubé. That is to say that one could consult a professional in one establishment, then another in another region, for example, and the computerized file will always be available to the caregiver. The patient could also consult his file and know which professional consulted him. The bill introduces the notion of implied consent, which removes an administrative step in order to ensure better fluidity of information. Access to his online medical record could be offered by 2024, but the centralization of information for the professional will be faster. Quebec is giving itself a year after the adoption of the bill to implement these legislative changes.
Lessons from the pandemic
The Legault government does not hide the fact that the management of the first wave of the pandemic was marked by difficult access to data on the ground. “The lack of real-time information was critical. There is information that we received two or three weeks late. I don’t think we can relive that, ”said Mr. Dubé. Described as a “mammoth”, Bill 19 amends 27 laws to allow the transfer of data between establishments and organizations. It is also by virtue of the state of health emergency that the government was able to obtain more precise data on the state of the network. The bill will provide access to “more granular” and “timely” data after the health crisis. Quebec plans to lift the health emergency after vaccination of 5 to 11 year olds, at the beginning of 2022. A bill will be tabled to ensure the maintenance of certain measures, including access to data while Bill 19 is adopted.
Management Tools
Minister Dubé believes that his bill is part of his desire to decentralize the health network by allowing institutions and departments to have access to a better portrait of the field. This information – which will now be standardized – will obviously be able to go back to the ministry and the minister. He will also be able to request them and obtain them more easily. Christian Dubé notes the management of emergencies and waiting lists for surgeries, for example. “We continue to have local management, local data, but we look at them on a national basis to be able to make arbitrations, sometimes”, supported the Minister. It ensures that the data remains denominational and therefore will not identify a patient, worker or doctor. This fall, negotiations between Quebec and family doctors turned to confrontation when the Prime Minister said he had a list of doctors who were not monitoring at least 1,000 patients. “I have never seen personal data and I don’t want them, but, I want to have them individually […] that means that I have information on a person, but I cannot know who it is, ”clarified the minister.
Access to researchers and the private sector
Bill 19 also gives researchers access to health and social services information, under certain conditions. The aim is to simplify the access process for research projects. “We must give both our internal researchers and external researchers the possibility of using data in an environment of trust in an organized manner,” argued Mr. Dubé. Quebec will set up a “research access center” which will oversee the requests. The private sector will not have direct access to the data, we are assured. The bill prohibits the sale of information. Québec solidaire has expressed concern. “We will be against any form of marketing or even sharing of personal information that belongs to Quebecers. The medical records of the population of Quebec are not for sale, they are not flesh for the pharmaceutical industry, ”warned MP Vincent Marissal.
Security locks
Quebec ensures that its legislative text is accompanied by sufficient locks to ensure data protection. The bill “gives the organizations themselves obligations in matters of governance and the protection of information, in particular the obligation to adopt a policy which implements the rules defined by the Minister”. The bill gives the Commission Access to Information (CAI) the function of monitoring its application and consequently grants it powers of inspection, investigation and ordering. It also gives it the function of reviewing access and rectification requests, and in certain cases provides for a right of appeal to the Court of Quebec.