Your sores, big and small. The medications you take. The fact that you may have already had an abortion. Or that you suffer from mental health issues.
Your health information is highly confidential. Given their personal character, one might come to believe that the best way to protect them is to write them down on a piece of paper, lock it up in a clinic safe and entrust the only key to your family doctor (if you are lucky enough to have one).
We’re caricaturing, but that’s pretty much how our health care system currently works. And that causes a lot of problems.
This is why the Legault government tabled a bill – number three – on health information. The objective: “promote a more fluid and secure flow of health and social services information”.
The government wants the data to “follow the patient” instead of being tied to a particular healthcare facility.
He is aiming right in the bullseye.
For now, doctors and other medical professionals trying to treat us must continually fax data to each other in an attempt to understand what ailments we suffer from, what procedures we have already undergone, and what results are available. .
Too often, patients have to carry around their medical data themselves to present to various healthcare professionals.
At the same time, researchers would like to know, for example, which interventions on a specific type of brain cancer have led to the lowest recurrence rate over the past ten years. The goal is obvious: better care for current patients by learning from the past.
But since health data is stored in safes to which researchers do not have the keys, this so-called “retrospective” research is very difficult to conduct in Quebec. On the ground, we are told that it is even worse since Law 25 on the protection of personal information was passed last fall.
The general result is that we are all worse off because of these constraints. There are delays, incomplete portraits of the condition of patients, essential analyzes that are not done.
Bill 3 is currently the subject of consultations in Quebec. There are several fears. The Access to Information Commission and the Federation of Medical Specialists of Quebec, in particular, are concerned about respect for privacy and professional secrecy.
These fears are legitimate and must be taken seriously. We said it, health data is not hockey stats or Ricardo recipes to share.
But the ongoing consultations are already pointing to a danger that these concerns will lead to a dilution of Bill 3. Faced with concerns, it may be tempting for the government to reduce the scope of the changes and move closer to the good old status quo. .
It would be a big mistake. Because caution should not be only on the side of the protection of personal information. Targeting the efficiency of the network, improving treatments, enabling the full potential of medical research, also means opting for caution.
When we know that it took two years for the health commissioner to obtain the data necessary for her first mandate, which is to assess the performance of the network, we can clearly see that there is a problem.
Confidentiality issues should therefore not be seen as obstacles to the circulation of data, but as essential conditions to be respected so that this circulation is finally improved.
There are ways to achieve this. For example, various levels of data access can be provided, with the patient at the center deciding what information will be shared with whom.
As for research, there are proven protocols that can anonymize data and protect confidentiality. Researchers have long called for easier access to data from the Régie de l’assurance maladie du Québec, in particular.
Bill 3 is crucial for our health care system. Data confidentiality must be a government priority, but it must not prevent it from carrying out the necessary revolution that has just been launched.