The Health and Social Services Information Act (Bill 5), more commonly known as “health data,” came into force on 1er July 2024. This is an opportunity to ask ourselves what it will change for us, patients, caregivers and users of care and services in Quebec.
Health data is, first of all, the information found in the computer systems of our clinics, hospitals, CHSLDs, pharmacies, etc. This data is of course covered by Law 5, which was adopted some time ago, in April 2023, by our Parliament.
This Act aims in particular to ensure that health data is more easily accessible, not only by clinicians, managers and researchers who serve the public good, but also by the people at the source of this clinical information: patients and their loved ones.
With Bill 5, you now have the right to view and access all health data collected about you by an organization, with some exceptions (for example, if it could harm your health). This could mean the end of long weeks of waiting to access your health record… often in paper format! Bill 5 paves the way for the implementation of a modern Digital Health Record, which will upgrade our good old Carnet santé Québec. I’m already dreaming of a secure and friendly Santé Québec application that would be accessible on my cell phone…
What is more, in terms of research, Law 5 aims to be innovative, by allowing patients to exercise “extended” consent for the sharing of their health data in order to advance science. This means in concrete terms that we can not only decide to support research projects with our medical information, but also research themes (such as oncology) or categories of researchers (such as those fighting cancer) with a single consent form.
And of course, in return for this, we can always exercise the right to refuse to have our health data reused for research. This is called withdrawal of consent or opting out in English. How will this refusal be exercised in practice? This is a central question that is currently occupying many experts at Santé Québec and in the ministries.
Finally, let me address one last encouraging point of Bill 5 to build even more trust and value around the use of health data in the public interest. The Act carries a central value: transparency. It will lead public and private organizations, as well as users of health data, to report clearly and precisely on their actions and intentions. Whether it is the organizations that will publish registers of health data projects or the researchers who will tell us about their methods of managing clinical information, all will be required to be more accountable to the public, and not just to the government.
This is therefore a golden opportunity for us, citizens, to seize this knowledge and this power in order to better inform ourselves, engage ourselves and participate, in our own way and on our own scale, in the actions that mobilize our health data. Our system needs, today as yesterday, our knowledge and our energy to hold, renew itself and continue to inspire confidence and hope.